My Mom's general practitioner doctor wants her to go to a specialist. Mom said no. Advice?

MissyLynette - here in San Francisco Kaiser will send home health providers for patients who are home-bound (and yes, dementia can be one of the reasons for being unable to go to the Dr.s office). They are likely to be Nurse Practitioners, but they see home-bound (& elderly) all day long, so have lots of experience, even if they don't have a specific piece of paper that says "gerontologist"

What about a hybrid solution?
Have her regular GP do the blood tests/urine tests, but send the results to the kidney doc for analysis, (he is going to judge by the bloodwork anyhow, why does he really need to look her in the eyes if that is the deal-breaker for her?). There are also non-invasive things (ie kidney-friendly diet) that are pretty non-life-changing and she might feel better with fewer toxins in her blood.
IF she has kidney problems only do those things that don't negatively impact her (if she LOVES bananas but they are a problem cut the back but don't eliminate-- she doesn't care? Skip them & replace with something not to high potassium)

If she has dementia she may not be able to make her own decisions, then the POA would make decisions on her behalf - but those decisions are supposed to be what she would want if she were capable of making the decision, not what you want. You don't just get to force her to do what you want or even what you think is best for her. Hopefully, you've had discussions about her wishes.

Once again this reminder: The POA does not make you the decision maker. You only become the decision maker officially when the person is incompetent. When she is still competent to make or participate in decisions, POA does not override that. You only get to the stage where she is not the decision maker when you have guardianship or she is in a coma and unable to contribute to the decision process. If you are going to hoodwink her, you may be operating as a loving daughter but not as her POA.

Nikki - as POA you may be the decision maker, however, it is your job to base your decisions on what your mom would do if she were able to decide for herself. Please keep in mind that one day you may be in her position, elderly & having your kids deciding what's best for you, and trying to tell, trick, or force you into medical procedures you don't want.

YOU are now the decision maker, NOT mom!

The more futile and unnecessary tests, procedures, and treatments that I saw pushed on very elderly patients with diminished quality of life the more disgusted I became working in healthcare. My own DNR and end of life directions are iron clad and in writing.

I don't know if the doctors are geriatric doctors or not, who are treating our senior, dementia patient, very ill friend. I didn't see it listed on their website, but the practice has gone through some changes lately and they have new doctors, new name,etc. I do know that they treat A LOT of seniors who have dementia. This is not ignorance, IMO. I tend to think it's a billing thing. Sad, but true.

I have suggested to my parents that he be evaluated for Hospice and how that works with a Hospice center, since there is no one to care for him at his home, but I don't get far. They say, it's up to his family. I get it. I guess they don't want to seem nosy or trying to tend to someone else's business. All I suggested was giving them information. Oh well....

I know that I am making my Healthcare directive clear. I'm also giving them detailed directions on how to obtain information for resources and legal advice. It's shocking how the family's are so clueless on these issues. They are at the mercy of the doctor and/or hospital. They don't know their rights. Wouldn't you think the hospital would offer support and information? It boggles the mind.

My mom would be alive today if I had gone with her to the Dr. years ago who wanted her to have more tests. And surgery on her bad leg with circulation problems. But I did not know. I did not keep as close a watch on her BEFORE she got really sick with caregivers. She died of PAD. And I think she had vascular dementia. After she finally (to my insistance) went in for a circulatory test on her bad leg and swollen foot, they rushed her to Kaiser ICU she never came home. After an angiogram they discovered she had severe blood clots that they tried to break up. Amputation was not an option. Mom was tired and ready to go. She died a few days later in ICU. I was mad at Kaiser since it took them so long to get her in for tests. Until I learned that my mom turned down surgery two years ago on her bad leg that her Dr. suggested she have after surgery on her then good leg. . She also always turned down using blood thinners. My mom was not honest with us, nor with the Dr. That is just how it was at age 85. They get stubborn as they age and they get very tired. Getting dressed and taking a wheelchair to all those appointments and tests is exhausting. At 92, I can't even imagine! You can't let them die inhumanely, but just how much is an elderly person supposed to take running the medical maze of tests and procedures? Our choice was to send her to hospice on strong meds for her pain. They were not going to let us take her home in her condition. I think that is why mom willed herself to die. Hard to see her go but she had been thru enough at the mercy of procedures and tests and meds and side affects and you name it. That to me was not humane. I can't imagine at 92.

Sunnygirl, this friend should have an eval for hospice. They will be given what is needed to be comfortable. Medicare picks up the tab. Drs are just making money off of them.

Well, you received so many great answers. IF taking your mother to a dr is like giving a cat a bath---that's when you have to use your common sense and humanity to make decisions FOR her. Most drs look at the numbers on the paper and treat accordingly--and they don't often thing "whole patient"--just what the "numbers" might mean. I wouldn't force my mother to go to the dr., I would talk to her PCP and see WHY exactly they felt the need to look further into something. It's no delight to trick an elderly person into a dr's visit. I remember my FIL hating his oncologist's visits, b/c half the time we'd wind up going right from the office to check him into the hospital. He got to the point where he'd practically fight me about going-"Is he going to admit me? I don't want to go!"
I'm sure this is a conundrum for many. How much do you do for someone who is really unable to decide what kind of care they want? If it's the start if kidney failure, I know in Mother's DNR, she does not want interventional care for that. Go read your mother's DNR and see what she chose. It may make your decision for you.

Your GP could just as well phone the nephrologist and ask for advice on what to do about those numbers on her labs if he is not sure what to do. He has not given you enough reason to go as yet. One good thing that came from this is that it triggerss you to discuss dialysis or no dialysis in her future. But dialysis is not done for mild or moderate elevations of creatinine or BUN or creatinine clearance. Sounds like its the primary care doctor who isn't sure what to do right now.

Sunnygirl1, were the doctors who kept ordering tests, etc. geriatricians?

careisgiving, I really hope this does not come across as argumentative. I just think the kind of doctor elders see is an important enough topic on these forums to pursue it a bit. I know our various experiences color our perceptions.

From a newspaper article in Houston: "Geriatricians are fully trained physicians, M.D.s or D.O.s, who specialize in treating the health problems of elderly patients. To become a geriatrician, a doctor must first complete a three-year residency and become board-certified in either internal medicine or family medicine. Next, the doctor goes on to a one- or two-year fellowship in an approved program of geriatrics, learning the specialized requirements of elderly patients under the supervision of an experienced practitioner. After fulfilling the fellowship requirement, the doctor must write another set of board examinations to become certified as a geriatrician." You can find many such definitions on the internet.

A doctor cannot call himself or herself a geriatrician. It requires board certification.

Yes, some areas do not have many (or any) geriatricians. I live in an urban area of 3 million people. There are at least 160 geriatricians here. Obviously if you live in Tinytown AL you may not have good access to this specialty (but small town living has other advantages, of course.)

I have no idea of the average age of geriatricians. My father talked often about his doctor and I was surprised when I finally him. I blurted out, "Oh, I expected you to be older. You seem to understand my dad so well." He replied, "I am a geriatrician. That means I treat older people -- not that I am one!" Of course he will be over 55 some day, but he sure wasn't when he treated my father. My husband and I both loved his geriatrician, and were dismayed when she was obviously pregnant. Would she take some years off? We were glad that her husband decided to be the at-home parent. Obviously she was not close to 55. I don't see why the age matters at all. But since geriatrics is a fairly new specialty I would expect that many are young.

When my children were young I took them to a pediatrician. When my husband developed dementia we saw specialists and also switched to a geriatrician as his PCP. My father and my mother both had geriatricians as PCPs. I am thinking of switching to a geriatrician myself, but I may put it off a bit.

Nikki, I don't know that this pertains much to your question at all, except that my mother's geriatrician did not urge her to have tests she did not want to have. I suspect a GP might have been more insistent.

In Dec 2014 I lost my Aunt Tootsie. She was 94. I stayed with her for her last 6 days while she was in hospice. She did not have dementia. However after a fall, hospitalization and rehab she told the dyalsis tech to " turn it off". She did this two or three times before her son was told about it. I'm not sure if it was too late to do anything different at that point but she was put on hospice. She told me she didn't remember telling them to stop it. She was matter of fact about it. She knew she was dying. She suffered awfully for several days and then was nonresponsive. She was always a big talker And we had many wonderful conversations during this time. She had been on dialysis about 18 months. She had a port or shunt ( not sure of the proper term) for many years before because of her poor kidney function but put dialysis off as long as possible. The day she fell she was waiting for her friend to pick her up to take her to dialysis. She had a knee replacement at 90 with no problems. She took trips with her husband. Her last long trip (5 hours) was to come to my mothers 95 birthday party. Later that year she attended her aunts 100th. She lived her life despite her poor kidney function but she did not have dementia. She was in terrific pain from the fall and made the decision to stop treatment while she was in that state, otherwise I don't think she would have stopped then. To me I think it's better to make informed decisions. The dr was telling your mom what he thought she shoukd do. As her POA perhaps you should seek
more information on what the best course of treatment is based on an experts advice. Then you could make a decision on dialysis.

Oh, I forgot to include that he has severe dementia.

Careisgiving has a point. I know of a family friend (late 80's) who has severe dementia, doesn't know where he is, body has contracted, cannot recover from hip fracture, cannot eat, cannot sit up, suffers recurring pneumonia and aspiration, etc. His doctors just keep ordering tests and treatments like he's 50 years old. I have no idea what his family is going through. I don't get it.

I respect what jeannegibbs is saying because this is her experience and we all have different experiences. This is my experience: Doctor specialty demand is based on location and money potential and the amount of debt/cash against medical liability insurance required to sustain the business at a healthy profit; some doctors are okay with a reasonable amount of profit, some doctors want more profit. Today's medical students are not rushing to specialize in primary care medicine because they're wanting to specialize in the higher paying specialties, like anesthesiology, oncology, radiology, surgery, etc in return for the years of medical school debt, low pay in residency, and years of higher income potential as we're all living longer. Geriatric doctors are PCPs with decades of work under their belt, not looking for a huge profit margin, have taken a few additional courses in continuing education credits to see what's happening in senior medicine, and then call themselves geriatricians. There's no medical residency for "geriatric medicine". How many practicing geriatricians are under the age of 55 years old? Not many. We live in a major metropolitan city with no geriatrician. We live down the street from a city widely nicknamed "Snowbird City", and there's not on geriatrician practicing there, just a handful of PCPs. Do some of them put quality of life first, first. Sure. But not many of them. Kuddos to anyone who can find a geriatrician but sadly this isn't the reality in many localities. And with all the changes and cuts to Medicare, PCPs don't want to take on many elder patients and the ones that do balance out the low pay rate reimbursement from Medicare by increasing supply of "younger" patients who have higher insurance reimbursement rates. It's so important to really think about quality of life instead of quantity of life. How many PCPs ask the patient's family something like "Let's talk about quality of life..." Not many. A lot of the PCPs just look at the labs, write scripts, write orders and then just push the patient on to the next doctor, who'll do the same thing. I love my mother so much and it's because I love her that I don't want her to suffer just to prolong her life. This is absolutely cruel in my book. As caregiver, as POAs, we need to be vigilant in advocating what's best for our loved one for their quality of life because 99% of the traditional doctors won't do it as it's not in their training.

careisgiving says "The only doctors who have any semblance of putting quality of life first are the doctors working in hospice care." They definitely do, by training and by the philosophy of the program. But I have found geriatricians to also be exempt from the "cure at all costs" mindset. Elders should have geriatricians as their PCP, just as children should have pediatricians.

My mother is 74 and living with vascular dementia - she has absolutely no quality of life. Due to the side effect of a medication required to treat a medical condition of hers for years, this medication has caused her kidneys to weaken. She's a DNR (both cardio and respiratory) and I'm her POA. She will not be getting kidney dialysis if it were to come this - because she has no upside to her situation as it stands now and her life will only get more miserable by being on dialysis. At your mother's age of 92 "ish", how realistic will kidney dialysis benefit her if she were to need it? Sure, it may be her some time but I guarantee you, she'll have very limited quality of life, if any; in fact, she'll be be miserable. Have you researched what dialysis does to the body and its potential complications - again - it's going to be even more difficult for these complications on a 92-year old. Traditional doctors are trained to look at the labs and treat the disease at all costs - not to think about quality of life of the patient. The only doctors who have any semblance of putting quality of life first are the doctors working in hospice care. Don't blindly assume that your mother's doctor is looking out what's best for her. You need to do your research now on kidney dialysis and decide now if this is something you want for your mother and if you don't - tell the doctor no kidney consult. Don't let him/her bully/persuade you differently. We're all going to die from something...Who wants be in misery in his/her last years?? I've learned painfully the hard way when it comes to aging, it's about quality of life and NOT quantity of life.

I agree with those above regarding additional tests on a senior who has a terminal illness, such as dementia. Is she a likely candidate for surgery, dialysis, or invasive procedures? If not, then I don't see what is to be gained. I can't envision that for a 92 year old person with dementia, but I would look at what she wanted when she was able to make those kind of decisions.

Have you discussed palliative care with her doctor? I met with my cousin's doctors in advance to discuss this. My cousin informed me prior to her becoming ill or her desires, so that's why she receives palliative care.

I don't know which kidney levels are high. For some there could be explanations, such as drugs she is taking. Drugs like Lasix, though good for what they are intended to do, are rough on the kidneys. It may be that tweaking the dosage or frequency of a medication could make it easier on the kidneys.

I would see the doctor, then decide what to do after hearing what is said.

When my mom was in her mid 80s and in rehab, "suspicious spots" were found during a thorough exam. When she was out of rehab and went to her regular geriatrician the doctor brought it up. "Would you like me to arrange for further testing?" she asked.

Mom: "No. I've lived a good long life. I'm going to die of something. If it is cancer, so be it. But I won't take treatment, so there is no point of doing the test."
Doc: "I understand. Many people your age feel that way. I will respect your decision, but I am obligated to tell you that if you do have cancer there are treatments for it, and the treatments have improved in recent years."
Mom: "But I will not have treatment. If I have cancer I don't want to know."
Doc: "Jeanne, how do you feel about that?"
Me: "I think it is Mother's decision. I will support her either way."
Doc: "I will accept this decision and record it in my notes. If you get to thinking about it some more and change your mind just call the clinic and I will arrange more tests."

Babalou, I guess in this case it was the patient telling the doctor, "I won't do the treatment, so don't do the tests."

Nikki, as others have said, look into what the options would be if she does have the tests and something is found. What would the treatments be like? Would they be advised for someone in her 90s with dementia? Would your mother be likely to cooperate with them?

Don't do the tests if she won't do the treatments.

A wise gwriatrician told me "don't do the test if you're not going to do the treatment". Call the doctor and ask what he's trying to find out.

Dialysis is no picnic and can leave you feeling just plain awful. I would take a good hard look at all the medications she is on and ask the pharmacist if any one of them or the combination of them is compromising kidney function. Pharmacists know more about meds and interactions than a doctor.

Mom can't really make a decision about dialysis or not... but we had my dad's brothers on it, and I can tell you it was not fun... yeah it extends life, but to what end? She puts on her clothes over her nightgown, she's agitated most of the time, unhappy, angry, and depressed. Yes, we are working on the right behavior/mood meds for her, but other than that, I know she would not go for dialysis even in her right mind at the age of 92. I think I need to get her there. I know kidneys are nothing to play with; but if they say 'dialysis', then it would literally take a herd of wild horses to force her into that, and I won't force her, if I have any say...

I'll start by saying I know nothing about kidney problems (thankfully).
I think your GP could give you a little guidance here, ie what would the treatment options be that a specialist might recommend? If we are talking about some tweaking of meds is it something that the GP could handle? If we are talking about possible dialysis would mom even be willing to consider it?
I believe there is no point putting you mom or yourself through the hassle of travelling to probably multiple appointments if you would probably not go forward with the treatments offered, but that is a judgment call you need a little more info to make.

I would say yes. Trick her, lie, manipulate, whatever you can do to get her to see a kidney specialist. This isn't anything to fool around with, regardless of how she feels. And you know that with her dementia, she might not even be able to detect anything amiss, but the bloodwork and other tests a kidney specialist would probably perform would be insightful to determine if something is amiss.