Apparently, it isn't the doctor's or hospital's responsibility to diagnose health issues

[Siwsan]

That is exactly what I was told, today. My 98 year old aunt was admitted with severe delirium. She is hallucinating, and her personalty has taken a 180 turn for the worse. She is already bedridden after she fell and fractured her hip, in January, but was otherwise alert and fully functioning. Then, sometime Monday night, something flipped in her brain.

So today, when I was again trying to get some information (I am her patient advocate) the nurse informed me that it was up to me to do some investigating and figure out what is wrong, because they are baffled, although she suspects it has something to do with her numerous medications. WTF???

We are heading back to the hospital, early tomorrow morning, in the hopes of being able to speak with her physician.

Has anyone else ever heard anything even close to being this absurd?

[riversedge]

1. I think medical facilities more and more are depending on family close associates to help

them figure things out. you are the ones interacting with the patient on a day to day basis. Your input is valuable the nurse many have been a bit brisk but they probably are baffled at the moment. Saying it is up to you is also a bit harsh. But give them any information--especially any changes in her activities/routine that you can recall--no matter how small. I know this is hard on you and it happened so quickly. Best.

[Siwsan]

2. I have shared everything I know with numerous staff members

From the ER to the floor staff. And been very detail oriented. Painfully detail oriented, and left nothing out. I even went to the assisted living center where she lives, and questioned them. And THEY phoned the hospital to report what they saw.

And, they are doing zero testing, now. They've done blood, urine, CAT scan, EKG and x-rays - all done in the ER on Tuesday, but zilch since then.

One nurse said she suspects it might be a medication issue so I should look into that. No, I think THEY need to look into that.

I was spitting nails by the time I left that place. I think tomorrow will be even more aggravating.

[dixiegrrrrl]

3. When I was a patient advocate, I got the best information from the pharmacists.

My patients would sign a release for me to talk to him, I would get a printout of meds, we would discuss any conflicts of medication and any concerning symptoms.

Most Dr.s to day just prescribe and I am stunned at how little they know about medication combos.
Including my own doc.

[Siwsan]

6. The nurses are pretty shocked at the volume of meds she's been prescribed

At 98, my aunt is more than ready to go, and she has expressed this repeatedly to anyone who will listen. It was one thing when she was even semi-mobile but now she is in bed about 98% of the day. And, she was much healthier before they started bombarding her with so many drugs. I just want her to be comfortable and in her right mind, if that is even possible, now.

[brer cat]

11. I second dixiegrrrrl's advice.

Sounds like she is on a ton of meds and a pharmacist would be the one to know if she is having bad multi-drug interactions.

You are in a difficult spot without much support from the medical community. Good luck to you and your aunt.

[dflprincess]

12. And I third it

I was going to just what you two have said when I read the line about her meds.

A pharmacist is the one who would be most apt to catch a bad combination or a dose that's too big. This is why my internist urges his patients not to use mail order pharmacies and to have all their prescriptions filled at the same pharmacy - especially if you're getting scripts from more than one doctor.

[Freddie]

28. They should contact the assisted living place about meds

My late parents were in such a place their last few years and the facility was in charge of all meds, made sure they took them, and used a pharmacy service for everyone there. The couple times they were hospitalized the nurses desk gave me a printout of all their meds to take along.

[WinkyDink]

24. Or side-effects. My mother started taking Gabapentin for pain, and then got bad tremors, a known

side-effect. So I stopped it.

[daredtowork]

62. lol, and thanks

Last edited Sun Aug 30, 2015, 04:08 PM - Edit history (1)

Without going into all the drugs I take, the one I ostensibly take for tremor has never worked. My tremor is in fact worse. Perhaps because I also take Gabapentin. I wonder why my neurologist, who gets a list of my meds before each visit, never brought that up?

Why I say "lol" is that I've campaigned actively for medication management. I've been prescribed things that actively conflict. Doctors seemingly blow off issues with side effects. I take one medication to deal with side effects of another. The stuff I take could easily send me down a permanent rabbit hole. But I can't even get nurse case management because NONE are on the "controlled substances" list.

The reason no one is responsible anymore is that medical care has been diffused into the idea of the "care team". Any and all doctors on the team may prescribe, but they aren't all aware of what each other are doing because your medical records don't follow you around because of HIPAA. Your Primary Care Physician is supposed to play quarterback - its amazing how ER docs also think you can always follow up with your PCP. However, harried PCPs who see hundreds of Medi-Cal patients may only see you once every 6 months: and you will be lucky to cram your most significant problems into that 20 minute visit. They don't want to get into too much tweaking. Your options are to take a new pill or stop taking something if it's not worth the side effects. Doctors seem to want patients to make that determination even though they are being paid the big bucks.

[REP]

68. Your healthcare provider may just have antiquated system

Most medical charts are on computer (and can be provided to the patient on CD if the patient needs them for a different healthcare provider). Any one of my doctors can easily pull up my chart, see what medicines I am currently taking, my allergies, chronic conditions, etc.

Nurses usually do not provide prescription case management; pharmacists do.

[daredtowork]

79. It's worse than that

They are just transitioning to a computerized EHR, and, while it seems to be getting better now, most physicians had such trouble using it that they couldn't find enough information to get an overview of your case. They spent most of the appointment (which is very hard to get - it took 7 months to get my most recent Primary Care appt) trying to find things.

My pharmacist has warned me about conflicts in my medications. He doesn't get involved with the doctors, though. When I've said I have trouble conveying my need for management, he says "doctors are like eagles, and sometimes you can't challenge them." But he clearly left that in my ball court. I wanted a nurse to work on it because the nurse could see me more often and correspond more directly with my primary care physician.

[REP]

80. 7 months?

It takes me about 40 minutes (as long as it takes me to drive, park, and make my co pay). I'm on Medicare, too.

Sometimes you just have to be read everything and pay attention. I was recently discharged from the hospital with an Rx for a very toxic antibiotic and instructed to discontinue three of my regular prescription meds during the course of therapy. When I picked up the antibiotic, refills of those three drugs I was to discontinue had also been ordered and prepared. If I hadn't been paying attention or read my discharge papers, I might've thought I was supposed to keep taking them, risking a life-threatening reaction. Instead I just refused those refills.

There are several handy tools online where you can input the names of medicines and receive a list of drug interactions, ranked by severity.

[daredtowork]

82. I'm on Medi-Cal not Medicare

That's the same as Medicaid for California. There are only a few primary care doctors who even see those patients where I live, and they are tremendously overbooked. I can see an urgent care doctor faster (usually within a week) if I have a serious problem, though. I have gone to the ER more times than absolutely necessary just as a way to get my situation attended to. I'm grateful for just having this: before the Affordable Care Act, I had very minimal access to healthcare, and I was suffering from a downward spiral of permanently disabling conditions.

I'm aware of the online tools for drug interactions - I had just never noticed the "tremors" one for Gabapentin.

Regarding your close call with your meds: wow - that's a good advisory tale to read everything!

[REP]

83. Yeah, that's why I never have to wait for an appointment

I have a couple life-threatening diseases, and I'm in the "no such thing as a simple cold" category. Yay, I guess? It'd be wonderful to be able to go seven months without seeing a doctor. Or be admitted into the hospital.

[daredtowork]

84. I would like to

take a break from discussing my problems to wish you the best with dealing with a situation that is clearly much more severe than mine. The Affordable Care Act greatly improved things for me, and I hope it did for you as well.

[riversedge]

4. Looks like you

have done your part over and above. Tomorrow you may have your answers. But you need to care for yourself also. So sleep well. And I do hope for the better tomorrow.

[Siwsan]

9. This has been a year for horrible family health issues

I lost my sister to cancer in January and my mother to Alzheimers in February. Now we are preparing for my Aunt to go. I am pretty much emotionally out of steam.

[KentuckyWoman]

15. Hey

Played your role a few times in my family. It's HARD. More than HARD. Exhausting confusing hard.


I know you are tired and being politely forceful takes a lot of energy. The nurse is correct. It is up to you to make sure her care is being properly coordinated. It isn't right - but it's the reality.

I've used different tactics to get everyone on the same page and paying attention to all the bits of info. At 98 the staff will be tempted to just write her off. She's a money pit for the hospital and for the insurance company (including medicare). The motivation to go to extraordinary lengths to call in a big shot diagnostician is just not there. I know this sounds harsh but you have to understand what the reality is at the hospital and also likely in the skilled nursing facility she lives in to move the machine on her behalf.

You've got to figure out the game and play it however you have to in order to politely, but forcefully, get what she needs.

You'll want to start by trying to contact her admitting physician. He/she is the conductor and any other medical people who see her are at their request. Call the office if you have to.

If that is no good then your next stop is a hospital social worker or the chaplain. Explain your concerns about lack of coordinated care and find out how they can help you. They almost always can.

I've also called the office for the director of nursing and gotten help from her assistant.

And don't hesitate to ask for help from the skilled nursing facility where she lives. You may need her to sign something in order to get her medical records so the facility doctor or director of nursing or social worker can chew through it with you. Sometimes they help.... sometimes they are more interested in covering their collective butts. If they have a chaplain try that too if you need to. They can't help with the medical part but they'll often know where to send you next.

My heart is with you. You have a tough job, a pretty much thankless job, but know what you are doing is incredibly valuable.

More

[Siwsan]

37. I expect to be meeting with the social worker on Monday

I spoke to the admitting physician, who works in some sort of convoluted 'coordination' with the physician at the assisted living center. He agreed with me that this is a case of delirium caused by pharma-over load and claims he has adjusted the meds. I do see a slight improvement in her cognitive abilities but also know this could take some time to resolve. They will do an assessment on Monday, as to what our next step should be.

I am her patient advocate, have power of attorney and I am on the DNR document so getting access to any medical info isn't a problem. The problem is how for-profit medicine uses the elderly as cash cows and I have expressed that, in those very words, to everyone I have encountered.

I'm also toying with the idea of contacting an elder care attorney. My cousins had to use one and have highly recommended her.

[daredtowork]

64. The Poverty Industry is the same

The market rate cost of just half the meds I take would sove all my problems if paid to me as direct income. Instead it is paid to an arrogant Big Pharma exec (who probably kicks homeless people off the sidewalk for kicks). The unconscionable part is I have to take these meds to show I am complying with doctor's instructions and taking responsibility for addressing my health problems: but any or all of these drugs could have major neurological consequences.

To over-simplify it, this is like being told you need to keep taking the red pill to keep your food and shelter even though you know some random red pill might make your head explode. Yes, our government does this to poor people (and elderly people) because many consultants who couldn't imagine being in the situation themselves got paid for their "expert" analysis, and many bureaucrats gain employment by providing the services recommended. And everyone feels entitled to judge and make more busywork for and impose conflicting appointments for the poor along the way. That's their job in the new economy: to manage those precisely excluded and rendered study targets by that economy.

Sadly, this is the worst kept secret in government. But bringing it up only seems to provide an invitation for rightwing cuts. More money needs to be invested at the local and individual level: it's the attempt to micromanage poorer-than-thou that causes all the problems.

[Siwsan]

77. My goal is to stop this madness

I have had to run this same battle over my father, mother and sister. I am a big believer in quality, not quantity without quality, when it comes to a life span, but that's not a profit maker. And my Aunt has repeatedly said she just wants to let her life run its course. But, until now she has been cognizant enough to make decisions about her health and she's a part of a generation who never questions physicians. I do nothing BUT question and challenge them, so tomorrow should be interesting.

Someone needs to get control over big pharma (ok, probably will never happen) and this for-profit medicine issue - it is beyond reprehensible.

[daredtowork]

81. I agree on Big Pharma, but I also think we need to look at the AMA and medical education

Since doctors are not unionized, they - like lawyers - have taken very strategic views of controlling supply-and-demand through education, controlling the gateways to their expertise (re: you must pay for the doctor's appt. before getting the prescription...), and packaging their expertise in ways that shift the maximum amount of income to themselves.

I don't want to simply bash the profession. A lot of doctors go into healthcare to help people. Successful doctors give people employment by staffing large offices or creating larger health care centers that centralize services in a way that are more convenient for patients. Thanks to the professional structures in place, doctors might suffer a lot to get to where they are. They take on heavy loan debt, and General Practitioners are paid much less than specialists. The costs of insurance do create an underlying drag on the whole industry.

Also, history shows that where workers haven't unionized, professional organizations are the way to go to protect their interests.

However, there is medical industry as a whole seems to be sucking far too much money out out of everyone's pockets, and the worst part of it is a lot of the costs are incomprehensible because subsidizing one thing is shifted around to inflating another. Patients get caught between medical providers and insurance companies trying to out-maneuver each other, and they are baffled by the big bills in between. This cost-payment structure is wrong in the first place.

Health care is for the people who need care, not for stockholders. We need to restructure the system around that, and the only way to do that is to take a more "socialized" view of medicine. We need to support university R&D (and give students scholarships in the process) - rather than relying on the "private sector" to "find cures". We need to flood the system with students. Then we need to provide those students with jobs (just not Celebrity CEO Paying Jobs) when they graduate so they won't decide that going into healthcare sucks. Perhaps we could do a national insurance fund for private practice, so doctors would still be responsible for major medical mistakes, but they wouldn't be a cash cow for private insurance in the mean time. We need to slowly build a Public Option until it is such the obvious and efficient way to deliver medical care that it converts into universal medical care.

Anyway a sympathize greatly with your struggles right now. I'm babbling on because it makes me think of the improvements that could be made.

[Syzygy321]

85. You have not responded so I worry that you

Last edited Sun Aug 30, 2015, 11:53 PM - Edit history (1)

have not understood or seen my posts. The hospital can't/won't force life-prolonging treatment on your aunt against her will.

But they will assume - if you don't say otherwise! - that life-prolonging treatment is what she wants and why you brought her to the hospital. Given that you started off saying "why aren't they doing more tests!" in the first couple days (when the doctors thought she had had enough tests), YOU sent a signal that you want super-aggressive therapy and full court press.

I get really frustrated with accusations like the ones you make - I know you were stressed but can you see more clearly now?
First you complained that the staff wasnt doing enough (why arent they doing tests? They dont want to diagnose her!) but also you say your aunt does NOT want her life prolonged with medical care; you believe the hospital wants to keep her around to "squeeze every penny out of her" but also say you are "surprised they haven't discharged her" because that would be more profitable. So you are angry that they are doing too little and also too much; if they want her to stay, it is for greed...but if they discharge her, that too is greed! I can't figure out what will keep you from being suspicious and angry ... and I am sure the staff can't either. Basically, from the staff's view they have done everything right and you are throwing out all kinds of mixed signals, and blaming them for no reason, no matter what they do. When what they have done is exactly what you wanted: they ruled out other causes and then made the diagnosis and are caring for her. That's not evil. That's good. They do not sound like the enemy. You sound unreasonable.
Understand: the staff is 100 percent under your orders if you are the POA. They cant treat her without your consent. All you have to say is "she's 98; she doesnt want to be 99; can we just make her comfortable?" and voila! They will obey! But until you say it, they will continue to try to "fix her" just as you originally demanded. They are probably walking ion eggshells around you, not knowing what the next accusation is going to be.

(Of course, please also understand that comfort-focused care is not euthanasia. She may have some time ahead of her, and you and the case manager will need to decide who will care for her: you, nursing home, etc.)

Blunt truth: families like you (full of accusations and suspicions based on nothing) make the job hard.

DECIDE WHAT YOUR AUNT WOULD WANT. (sounds like she was clear that she wants comfort care, not life-prolonging care.). SAY IT CLEARLY. Ask any questions you want - but if you assume "they're all lying cheating stealing idiots" then obviously no answers will satisfy you. I recommend you treat the staff with the same respect you show the secretaries and mail carriers and plumbers in your life: namely, quit make unsubstantiated accusations and hurling insults against complete strangers who are working their butts off for you.

Please remember you are never obligated to set foot in any hospital or pay any money to Big Pharma...and you can leave/remove your aunt/flush her meds any time you want, if you have a safe plan for her.

Edited to add: when I wrote that the staff is under your orders, understand that that holds as long as your aunt can't speak for herself. If she becomes lucid, she can make any choice she wants for her own care. (usually though, a person her age remains partly foggy after an episode like that. She may recover but not have the judgment and memory to direct her own care, in which case you still speak for her.

[Siwsan]

86. I have not responded because I don't owe one

You have no idea of the whole picture and I'm not going to go into it because I do take what you said as accusatory. There are many things at play that I am dealing with beyond just this situation, and this sort of issue has been ongoing, for me, for well over 16 years, with one family member or another. Being blistered by you, a complete stranger with an obvious agenda, is the last freaking thing I need, right now

I would really, really prefer it if you would just let this go because I don't have the energy for this kind of vitriol, right now.

[Mnemosyne]

16. Sounds so rough, Siwsan.

[uppityperson]

5. I was going to say make sure they do a urinalysis as that often is the cause

for such sudden change. It sounds very scary and really frustrating, good luck to her and you.

[Siwsan]

7. All tests came back negative

She's had chronic UTIs, and that was the first test they ran but now she's completely clear.

[Historic NY]

27. Did you bring the pills she takes with you to the ER??

[Aerows]

19. Going to the Emergency Room

especially in an ambulance can cost as much as a down payment on a house.

I think they could do a little bit better than throwing up their hands and saying "I'm a medical professional, but I don't know."

[Historic NY]

31. Here our services bill Medicare or insurance....

if none or too poor w/o insurance they waive the fee.

[Ilsa]

8. Have they done a urine test for UTI since the symptoms began?

Or any other exam for an infection of her urethra, bladder, kidneys? Urinary tract infections in geriatric patients can cause them to drastically alter their behavior, especially if they are already being treated for dementia or a chronic mental health problem, no matter how mild. Aggression and paranoia are typical.

[Siwsan]

10. No UTI,

She just finished treatment for one and her urine is clear.

She had two sisters die of Alzheimer's and we have been wondering if she might be starting down that road, but this hit so fast and hard.

[enlightenment]

13. Was she on antibiotics for the UTI?

They can induce delirium in the elderly (happened to my mum).

Good luck, stay strong, and take plenty of deep, calming breaths while dealing with the hospital and practitioners.

[blue neen]

18. Very true.

Some of the most commonly prescribed medications for UTI's are famous for drug interactions.

[Downwinder]

14. How is her potassium?

[blue neen]

17. As others have so wisely suggested, a visit to the pharmacist could be very helpful.

In addition to checking on interactions and dosages, the pharmacist could make sure the prescriptions were filled properly. The wrong medication or the wrong dosage of medication could have been put in one of the bottles. Errors do occur in pharmacies.

Also, people at age 98 don't need the same amount of medication that they needed when they were younger. Our kidney and liver function lessen as we age. That's another thing they could check---her kidney and liver functions to make sure she is metabolizing meds properly.

Good luck.

[Laffy Kat]

20. Ask for a pharmacology audit and consultation.

Most patients that age are WAY over-medicated. It can be an arduous process, as so many agents need to be titrated down, but it can also reduce confusion and sedation and improve the quality of life. I feel your pain. You're a wonderful niece.

P.S. There is also something called acute-care dementia in which institutions can exacerbate confusion.

Good luck.

[Siwsan]

26. They did a review and will adjust her meds

This is delirium due to over medication. I want them to take her off of everything but her seizure medication (she has epilepsy) and the blood pressure meds. What they are doing to her, now, is making her life a living hell - almost a living death. She has repeatedly expressed that she is ready to go, yet they keep artificially prolonging her existence.

I told the staff that I would put myself on an ice flow in the arctic before I'd let anyone do to me what they are doing to her.

[Laffy Kat]

32. Good. Hopefully, it will help a lot, although it may take a while.

Thank God she has you!

[yourpicturehere]

21. Potassium

Have SOMEONE (if anyone is responsible...sarcasm) check her potassium. A friend of mine had acute UTI's and the antibiotics made her sick and her potassium was so low, she was close to death...at 57. She was having hallucinations, too.

[Are_grits_groceries]

35. I went through that.

An anti-depressant was leaching my potassium out. I ended up the the ICU for 2 weeks. Scared the shite out of me. I remember watching the light switch sliding down the wall. I remember thinking, that might be cool if I was dropping acid.

[bemildred]

22. All those specialists. nt

[WinkyDink]

23. The bottom line: Hospitals do NOT want patients of her age. Period.

I have had reason to be grateful to doctors these past 2 years, but also reasons to be disgusted, &for exactly what you wrote:

THE FAMILY IS SUPPOSED TO TREAT THE PATIENT. Hospitals lose money on Medicare patients, so they discharge ASAP.

Currently, I must treat and bandage my 91-yr-old mother's diabetic ulcers on her foot.

[Siwsan]

25. I'm shocked they haven't discharged her, yet.

I talked to the social worker, today, and they will have the assisted living facility to an assessment to see if she can return. I doubt it. So then we will have to find someplace that will take her. And, I was right on the nose with my diagnosis - she has delirium do to over medication.

[WinkyDink]

29. I can believe it; I've seen the mental changes with a couple family members.

[Syzygy321]

66. I would be happy to discuss that from the other POV

(I'm someone who discharges people with diabetic foot ulcers nearly every day.)

If you want to know why, feel free to PM me or ask me here.

[REP]

70. I'm guessing the risk of CA-MRSA

The hospital is the last place I'd want to stay with a skin ulcer. And I was in last month with "regular" non-CA MRSA on Vancomycin and Zyvox and couldn't get out of there fast enough.

[Syzygy321]

73. That's a good point - but really it's about

using hospital beds for people who need them. A diabetic foot ulcer is a slow-healing chronic wound: it can take three weeks or three months to heal. Some of them heal never.

You can't have tens of thousands of perfectly stable people lying in hospital beds for weeks, months, or years - just so a nurse can come change their foot dressings for 10 minutes twice a day because the patient or family doesn't want the inconvenience!

What would those stable patients do the other 23.6 hours a day in the hospital? They would lie in bed, bored to death, getting older and weaker, having no life, getting poor sleep, maybe catching MRSA, complaining anout the food - and costing a thousand dollars a day for, basically, super-fancy hotel service to clean their room and bring their pills and meals, and check their blood pressure six times a day. And that thousand a day is paid by someone: usually Medicare or insurance - and the cost must be passed on to the customers. Meanwhile the hospital can't care for *truly* sick people because the beds are stuffed with people who could and should be elsewhere.


Hospitals are labor intensive and expensive to run, because they are meant for acutely sick people who actually need a nurse running in and out and a doctor (or six) to make day-to-day decisions. When those people are well enough to get the care they need in a more relaxed and homey place (at home with family and visiting nurse 3x per week, or at a nursing home or rehab center or whatever suits the patient's needs) they are discharged to make room for all the new sick people banging on the doors.

Hope that makes sense.

[REP]

76. Absolutely

Due to my kidney disease, I'm prone to some pretty ghastly skin infections, like necrotizing cellulitis. Sometimes I need to drop by Wound Care for a daily visit, but most of the time I can deal with the dressings myself; being incarcerated in a hospital for that sounds like hell. With the MRSA, I was hoping to get another PIC and be sent home with the Vancomycin because from my standpoint as a patient, my immune system isn't that great to begin with and I'm already sick, so let's get me out of here and let someone who needs it have the bed.

I think patients and the patients' families don't always understand that some things don't heal faster because hospital and that, in fact, the longer they are hospitalized, the higher their chances of becoming sicker are. That, and the cost which affects everyone. It's understandable that a lack of understanding of their medical condition and worry may overwhelm common sense in the heat of things.

[Liberal_in_LA]

30. wow.

[bettyellen]

33. Please get a referral to a geriatric psychiatrist- they know best how to figure out what it is-

and also have the most resources to assist family and caregivers.

[Siwsan]

34. She is being seen by a very good neurologist

He has been treating her for her epilepsy, so he knows her. I am meeting with a social worker on Monday and we will see, from there, but I suspect we will be in a frantic search to find a facility that can care for her. I am going to DEMAND that they stop overwhelming her system with these drugs and just keep her on what ever will make her comfortable. The poor woman is tired, and past ready to shirk off her mortal coils - something she has repeatedly said.

[bettyellen]

49. Ah, okay. For elder care Geri-psychs are better IF its going to be a long haul situation....

As most often is the case with Alzheimer's.
But it sounds like you guys are doing an excellent job In a tough situation. I feel for you!

[dembotoz]

36. thank you for doing what you are doing

it sounds very hard

did similar for my mum last year.

please consider the plight of those poor souls who face this on their own

[Siwsan]

40. I've been going through this for over 16 years, with one family member or another

Lost my Dad to a brain tumor. Lost my sister to cancer. Lost my mother to Alzheimers. There have been very few breaks in the medically related issues. I haven't heard a phone ring without jumping and fearing the worst since some time in the past century.

I actually left my job 3 years ahead of my original plan because the stress has gotten overwhelming.

[lonestarnot]

38. UTI?

[Siwsan]

39. No - it actually is what I expected. Over medication

It is one of the causes of delirium. They are doing adjustments and she is slightly better but still miles away from how she was on Monday. At 98, I don't have much hope for her recuperative powers but she might just fool us.

[lonestarnot]

41. 98 is a long life, but in the scheme of things, it is a very short time.

[Siwsan]

42. She has constantly voiced her desire to be done with things

She's lost all but one of her siblings (her 84 year old baby brother) her husband, several nieces and nephews, and all of her contemporaries. And now being confined to bed more than not, well, the quality of life is diminished almost to non-existent.

It's sad.

[pnwmom]

44. Is hospice involved in her care? Given her age and condition I think she'd be better off

with hospice care than in ICU. Especially given her expressed wishes.

[Siwsan]

46. I asked about hospice but the doctor said she's not a 'candidate'

She would be, if they'd stop pumping her full of preservatives and just let her body do what her body is trying so valiantly to do, which is shut down.

[pnwmom]

48. Most doctors wait too long, but unless he thinks she has more than 6 months to live,

she IS a candidate. I'd get a second opinion on that, based on her current condition.

(The reason I say most doctors wait too long is that most people, by the time the doctors refer them, only live for a month on hospice. So the doctors are waiting longer than they need to and the patient is being deprived of benefits. If it turns out that the patient lives longer than 6 months, then the doctor can re-certify the patient as not expected to live beyond 6 months -- unless the patient has gotten healthier. Some people are taken off hospice care when they improve.)

[Syzygy321]

54. She has the right to refuse care. She is not

obligated to submit to needles and tests etc.

In your first post it seemed that you wanted her to be put through more tests than she was getting - but it sounds like your aunt doesn't want that. She wants to be comfortable and to die. That's her right.

Doctors wont do euthanasia, but on your orders they can certainly stop trying to pull her back from the brink, and let nature take it's course.

They are often hesitant to suggest this course themselves, because the reaction from family members can be an outraged, "You don't care about my aunt! You're not trying to help her! You think just because she's old that she should die!".

It's pretty tricky. And... no offense.... but if you started off spitting nails because you thought the staff was doing too little, and have been talking about getting a lawyer, no one will *dare* suggest backing down on full-court-press because they don't want you yelling or accusing them of neglectful care and bringing some nutty lawsuit down on their heads.

You have to take the lead in speaking clearly for your aunt's wishes.

[Syzygy321]

53. If your aunt's wish is to NOT have her life

prolonged by medical intervention, she would every right to say that (if she were able). Since she can't speak for herself, you have the right to do it for her.

Please make sure the doctors and nurses know that she wants her life to be over (if that's what she has told you.).

If you/ your aunt prefer, they can stop drawing blood and turning her and urging her to eat and giving lovenox and generally annoying her, and change to comfort-focused care.

It's totally up to your aunt. And you are her voice.

[pnwmom]

43. How are her sodium levels? Do you know if her weight has changed?

Ask WHEN her electrolytes were last checked and IF her sodium levels are currently normal. If they are too high her body, including her brain, could be swelling, which could cause her symptoms.

Yes, hospitals and nursing homes can and do overlook obvious things. My mother was hallucinating and they wanted to give her anti-psychotics. I said no and asked them to check her electrolytes. It turns out she was high in sodium -- they hadn't bothered to tell me she had gained 20 pounds in a few days. (She lived in my brother's state, not mine.) When they got the water out of her tissues she went back to normal.

[Siwsan]

45. It appears to be a case of over medication

I thought she was exaggerating when she talked about how many medications they were giving her. That is her M.O., but it appears she was right. Then I got a hold of the list and almost fainted.

I am going to do my best to get them to stop the madness. I don't want any push back, either, because what they are doing, now, is criminal.

[ScreamingMeemie]

47. Yes. My grandmother, 92, 4 months ago.

She was admitted to the hospital for gut pain, they did not contact her PC and they didn't give her her Paxil. Going cold turkey off Paxil caused my docile little grandmother to become a frightened, paranoid, shoving mess. They threatened to tie her down. When I asked about her medications they told me that "no one had updated them about it." This is in a hospital that is affiliated with her doctor's office with all records readily available online.

It's the new "norm." We have to manage our own health on all levels.

[Syzygy321]

50. Sorry your aunt is sick.

A couple points:

First: those were the words of the nurse (I am assuming it was yr aunt's floor nurse). She is a hardworking professional and wants to help get a diagnosis.

She may have simply meant that since meds are a likely cause, you should look into recent med changes or figure out if she is misusing her meds (for example, count the tablets left in her Xanax or digoxin bottle and see if she is following directions)

Diagnosing is not magic - it's about following clues. With your aunt unable to speak for herself, and the hospital staff having NO way of magically figuring out if anything changed recently at home, it is normal that they would ask the involved and caring family to supply missing information.

Meanwhile they have probably checked her blood counts, urine, chest x-ray, head ct, and are caring for her round the clock

Please don't hesitate to ask questions about the diagnostic work done by the hospital staff. But do your part too. No one knows what happened just before your aunt got sick - except you.

[Erich Bloodaxe BSN]

52. Nurses do not do medical diagnoses.

Nursing diagnoses are related to symptom treatment, not disease treatment per se, and are not 'medical diagnoses'. And while a nurse can pass information along, such as treatment plans or medication regimens, you've got to talk to a doc about any actual medical diagnoses. Your nurse probably means well, but even if the doc told her he's (or she's) baffled, it's really his/her place to tell the patient or patient's representative that.

As others have pointed out, it's unfortunately possible that the hospital simply doesn't want to expend the resources necessary to rule out every possibility on a 98 year old. I hope that's not the case, though.

(Edit, ah, going by the comments, it looks like you got back out there, and got some real answers. Good.)

[Syzygy321]

56. "Doesn't want to expend the resources necessary"?

Last edited Sat Aug 29, 2015, 08:38 PM - Edit history (1)

Come on - you're a nurse, yes?

That's not it at all.

Argh. I do this for my bread and butter - and while I expect non-medical people to have all kinda of wrong (often truly insulting and CT-based) ideas about medical care, I do not expect it from a guy with BSN in his name.

Jeez.

Sounds like the doctor did the smart tests and then was smart enough to STOP putting auntie through the ringer when it became clear that adverse effects of medicine was the top (and only reversible) possibility.

OP wanted more tests; doctor wanted to adjust meds and wait and not torment the poor lady with tests that were highly unlikely to provide any answers - let alone find a reversible problem. Doctor, as OP later admits, was right all along - but you wont hear the family member retract the earlier misplaced anger - or apologize for her rather slanderous accusation that the hospital/staff "didn't think it was their responsibility to diagnose medical conditions.".

(She was emotional and worried; I get it. But she hasn't edited the slanderous title of this OP. Probably it hasn't even occurred to her that she was wrong and staff was right, and that she has hurt their reputation - and mine and yours by association - quite unjustly.)

That's what doctor and nurse get paid for: judgment. Not that they are always right from moment one, but they know the general odds, and weigh medical risk vs. medical benefit.

NOTHING to do with "not expensing resources."

[Erich Bloodaxe BSN]

57. I've been at some good hospitals

and I've been at some awful ones.

I've seen doctors I'd trust with my life, and others I wouldn't trust with my dog's, much less a human.

And yes, I've heard frank discussions about allocating resources. No hospital I've been at had infinite time, personnel, or immediately open scheduling slots for certain tests. Sometimes, your doctors make that judgment call about whether to go looking for more, or just wait and see. I'm not terribly surprised it was a med issue, as almost every older patient I've ever run into seemed to be on more meds than you could shake a stick at, and tossing even one new one into the mix can create the most surprising outcomes.

I'm happy that you've only worked places that didn't ever run into resource crunches.

[Syzygy321]

59. Guess I'm lucky then. At my hospital

the doctors order the tests based purely on risk-to-benefit; the hospital eats costs all the time for people who can't pay or can't leave for weeks; and if there's a test or treatment we can't do or can't do optimally, (rare!) we transfer to the university hospital.

I don't know where the money comes from, but it seems bottomless. The only caveat is, we are asked to use good judgment and work efficiently.

[Erich Bloodaxe BSN]

60. Sounds like a great place to work at.

How are your staffing levels? What sort of patient to nurse ratios do you have on a med/surg floor? Or the non-critical specialty wings?

[Syzygy321]

61. Tele beds: five patients per nurse.

Med-Surg can be five or six.

ICU usually two (one-on-one on occasion.)

The nurses seem pretty happy and there isn't much turnover. And no layoffs ever.

The only thing that's sometimes hard is getting sitters. For suicide watch I can always get one, but sometimes not for agitated patients. So: seroquel, Ativan, reatraints at times....

[Siwsan]

75. This nurse was "new" to the facility

I don't know what kind of work situation this nurse came from, and the other nurses I've talked to have definitely NOT made such a ridiculous statement. Even the other patient in the room was shocked by what that nurse said. I did find it odd that the physician actually asked me what I thought was going on. When I told him he just kind of talked around my suspicion, but then gave the exact same diagnosis.

We meet with a social worker tomorrow. And from my observations, the delirium has abated, but all of that excessive physical exertion has really wiped her out.

[pansypoo53219]

55. they need a list of her meds.

[Syzygy321]

58. Now that you realize the hospital DID diagnose

aunt's condition (without a hundred unneeded tests), would you like to withdraw the accusation made in your OP and give credit where it's due?

Or...not?

[thecrow]

63. What about hydration?

My mom got dehydrated while she was in the hospital and it caused her to do a 180. She wasn't eating properly and wasn't drinking enough.
She began babbling incomprehensibly. So I started feeding her ice cream (to her it was a food group) and she made a rebound within 48 hours.

[pnwmom]

65. Rereading your OP, maybe the nurse meant that it was up to you to talk to the doctor,

and maybe find a different doctor -- that that would be the investigating you needed to do.

I know how scary and frustrating this must be. But given what you've said about your aunt, I think you should call the medical social worker who works in the hospital, and ask him or her how to get hospice care for your 98 year old aunt. Medicare will cover 6 months of this care, as long as you can find a doctor who will estimate that she has no more than 6 months to live. If she lives longer, s/he could re-certify. If she got better, she could leave hospice. There's really nothing to lose -- and hospice is a great program. Much much better than dying in ICU.

[Siwsan]

67. It was specifically said they were baffled, so I had to start investigating

And, oddly enough, when I said I HAD been looking up information and found the delirium diagnosis seemed very possible, it was initially waved away.

They won't recommend her for hospice, at this point. I'm sure they figure they can squeeze every cent out of her, first.

Sorry, but my faith in modern "for profit" medicine is pretty much non existent. I've lost too many family members to these money grubbers.

[pnwmom]

72. Who is "they"? Can't you get a second opinion? And have you spoken

to the hospital social worker about this? Is the "they" some doctor in the hospital? What about her doctor before she went in there?

When did you ask? Before or after the delirium set in?

Just because one doctor says no doesn't mean every doctor would say no. Or that saying no yesterday means they would say no today -- given changing circumstances.

Here is a form that you can use to contact the Hospice Foundation directly. If I were you, I would fill out this form, stating your aunt’s age and the specifics of her medical condition – what all her diagnoses are and what her symptoms are, including the delirium. Let them know she is a very sick woman. Tell them the doctor at the hospital (or whoever it is) is refusing to certify her for hospice care, and ask what you should do, because she doesn’t want more medical care, and she is suffering, and – in your opinion – she should qualify (for probably having less than 6 months to live)

You are your aunt's advocate and you are not powerless to stand by while they make her suffer for profit, as you believe. You can fight for what she needs -- which you are in the best position to know. Good luck!


http://hospicefoundation.org/Ask-HFA


http://hospicefoundation.org/End-of-Life-Support-and-Resources/Coping-with-Terminal-Illness/Hospice-Services

Not just for cancer (or adults) anymore


It is not surprising that people often associate hospice with cancer. In the mid-1970s when hospice came to the U.S., most hospice patients had cancer. Today, more than half of hospice patients have other illnesses for which they are medically eligible for hospice services, such as late-stage heart, lung or kidney disease, and advanced Alzheimer's disease or dementia. Hospice also once was exclusively for adults but today many hospice programs accept infants, children and adolescents.
Medical eligibility


In order to receive hospice services, a hospice physician and a second physician (often the individual’s attending physician or specialist) must certify that the patient meets specific medical eligibility criteria; generally, the patient’s life expectancy is 6 months or less if the illness, disease or condition runs its typical course. However, if the individual lives longer than six months and their condition continues to decline, they may be recertified by a physician or nurse practitioner for additional time in hospice care. Similarly, if a hospice patient's condition improves, they may be discharged from hospice care. The patient is eligible for hospice again if his or her condition begins to decline.

[Syzygy321]

74. Then take your aunt home. You can check her out AMA anytime,

if you have a safe plan for her care. No one forces you to seek medical care.

Why keep her in the hands of theae evil money-grubbers who are squeezing every cent out of her - and don't know what they are doing - and have killed half your relatives? What a crazy choice you are making!

Truly. Getting medical treatment is a choice, not something forced on anyone.

[DirkGently]

69. I once saw something similar. It was an infection.

The elderly wife of a relative was suffering from terminal cancer, but *while in the hospital* took a bizarre turn for the worse, becoming delirious and speaking nonsense. The hospital, oddly, offered no opinion on what was going on.

What eventually became clear was that she had contracted a separate, severe infection of some kind while in the hospital. Whether or not it was related somehow to the cancer, they never said. They never said anything. They treated her, and she recovered from the delirium, before eventually succumbing to her underlying illness.

It struck me that the hospital was avoiding the acknowledging that she nearly died of something likely unrelated to her illness, contracted while under the hospital's care.

[GreatGazoo]

87. A friend's relative developed a bladder infection while in care for alzeheimers

really affected her thinking and mood.

My dentist had me on pro-biotics during a course of pre-surgery antibiotics and they made a huge difference in both my GI tract and my mood.

http://www.theatlantic.com/health/archive/2015/06/gut-bacteria-on-the-brain/395918/

[JCMach1]

71. My Great Grandmother had the same type of episode

when she was 93... It prompted my family to get her into a full-time care facility (family was taking care up until that point).

[Syzygy321]

78. Pre-existing prejudices are problematic.

Anyone who walks in the hospital's doors thinking (as OP seems to) that medical staff is incompetent and just wants auntie's money, will perceive plenty of evidence to back that up (unless auntie gets a magic pill in the ER and is instantly better, which at 98 will never happen).

Conversely, anyone who walks in thinking, "The doctors know best; I'm in great hands" will forgive (or not notice) gross infractions.

From the other side: it's frustrating to do one's best and use one's training - on people who come in voluntarily and can leave anytime! - and be called an incompetent moneygrubber based on zero evidence but the family's own angry prejudices. But yeah, it's frequent. I always remind myself that I get a paycheck and the satisfaction of a job well done. I don't need thanks on top of that.

The truth is, most patients and families are great - and the high-strung or accusatory ones are just stressed; and most will understand and turn nice if they're given good explanations and get their questions answered and know the plan.

Some though: there's nothing you can say. They already know you are evil incarnate just because of your job.