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systemic medical breakdown and open conflict - What can be done in dire circumstances?

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Some of us appear to have been confronted by systemic medical and/or legal blowups in hospitals/nursing homes/hospice that in their worst form appear to be what I will call getting T4'd, being tacitly starved or put down with "them" citing govt/insurance regs or "standard  medicine", and caregivers' struggle over authority and control, while being actively usurped at a facility at a critical time.  Ultimately it is a matter of communication,  command and control over what medical techniques and philosophy will be used, even with (y)our own cash.

Families and caregivers are often at great disadvantage.  They typically do not have the subject matter expertise to repeatedly challenge the doctors and nurses at a facility, even when it becomes demonstrably clear someone/something there IS wrong.  They are inexperienced on someone else's unfamiliar turf.  The facility has its own rules, can (mis)cite various rules and regulations, and will have its own adversarial legal capabilities in an arcane legal area that is getting more unfriendly every year.  Administrators, doctors and nurses may transgress boundaries and illegitmately assert actions or control.  Most of all, they may ignore you in a time critical situation.  Caregivers can have outside opinions and expertise, legal and medical, but they do not command the facility, and may have limitations on who  (outside dr/nurse) can enter. Some issues, while legally in the right, will simply be against current comfort zones of such (backwards) facilities areally. You may or may not be able to simply switch/upgrade facilities.  All during this time, bills can run $10,000s per month of actual out of pocket cash, in utterly frustrating circumstances, detrimental and dangerous to the patient.

Both or either caregivers and medical personnel may be wrong. Some parts concern the differences of conventional, natural and alternative medicine where "conventional" is not a fixed constant either. Some parts concern government policies or local practices not in the indiviadual's favor.  Most off all, this can blow past legal, medical and personal professionalism, and simply unleash naked egos and emotional responses.

Some categories of issues I've encountered either with cancer or elder care:

1. involuntary termination of nutrition or dispute over nutrition (where there is a demonstrably more correct but less common nutritional solution)

2. systematic medical ignorance and error  

3. outright conflict with misinformed staff or misbehaving facility (based on outside medical and legal advice)

4. assertion of rights and POA in a conflict

5. are there tacit "T4" policies, governmental or profit center based?

6. getting safer shelter

I appreciate war stories, positive suggestions, and cogent analyses.  Let's try to avoid accusatory politics where obviously various philosophies, politics and personalities ARE factors. 

mags uk
Posts: 9
Joined: Mar 2013

I do not post often as I am from the UK and not all health care is directly comparably however in the Uk they have recently abandoned a care pathway due to complaints that it failed to meet the needs of the dying in the last stages just as "living by faith" has commented on. Whilst not knowing your health care well enough to make a judgement, it would be appropriate to learn from the errors we have made and pursue best practise in this area. I know there are many good examples of end of life care and as a family of health care providers we are open to ensuring that the patient remains center focus on health care delivery. For whatever reason focus can shift and its always best to be open to reasoned discussion and adjust practise where appropriate. It is in my opinion that it is more to do with raising clinical practise than politics although some would argue that they are not mutually exclusive .

Regards Mags

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

We all need a Posse to assist us through this jungle of ambiguity.  There is a strange nexus (intersection) between the legal and the ethical.  In other words, what we see as right and what the law allows.  They are often not the same thing.  

We can get help from our doctors, attornies, chaplain, hospice directors and our most valuable friends on this board.  Communication with these helpers in advance of the need can be most helpful.  Recently I read a post that was sad and perhaps avoidable.  

  • It is important that all critical instructions are clear and available in advance of the need.  
  • Read every piece of paper completely before signing and ask questions !!
  • It may or may not be possible to move the loved one to another faciity.
  • Above all, don't wait till there is no time to work out the details.

Hopefully; end of life care can remain focused on the loved one....

Peace,

Art

UncleBuddy
Posts: 1019
Joined: Aug 2013

I have been dealing with one brick wall after another with the health care profession. So far, it's not the care my brother is receiving, it's the lack of communication between the hospitals/staff and caregivers. Since my brother is intellectually disabled (low IQ) but has learned to adapt by nodding yes and telling people he understands what they're saying, he has fooled a lot of professionals ino thinking he's normal. I am finding out that doctors and nurses don't read the charts thoroughly, so they are missing the notes that they are to contact his family for any important decisions. If my brother wasn't as sick as he is, he would have been transferred out of the hospital last week. I had to threaten "LAWYERS"  in order to get anywhere. Yesterday I chewed out a PT because she was chastising my brother for not getting up and walking around. The guy has had fever, an infection and had a major surgery. They had pressure cuffs on his legs to prevent clots. No one told him he was physically able to get up and walk. Since he is "ID," he won't do anything unless he's told. I told her that she needed to communicate with his doctors and they need to communicate with us, because this hospital has the worst communication skills I've ever seen. She was not too happy and walked out of the room. Oh, well. She's lucky that I am a calm person and didn't scream and holler. I thought I was very "to the point." 

I handled it by calling the social worker, patient advocate, nurse practitioner, doctors, nurses, lawyers, and representatives from ARC. I am hoping that things will change, but I don't have a lot of faith that it will because the same thing keeps happening over and over again. We'll see what the next few days bring.

We shouldn't have to deal with all of this BS on top of this dreadful disease!

Lin

PS Yesterday they performed a procedure on my brother without our permission or any notification. They put in the filter and just called his onc today, after I gave the hospital onc a hard time. They told my brother he needed it and he said, "Okay, I guess" They told him if he didn't have it he would die, so they used scare tactics. I told them if they do one more procedure on my brother without our consult, we will sue. My sister wants to sue anyway, but I'll let her deal with that. I have too much to worry about taking care of dad and my brother. I am just hoping he gets rid of this infection soon so we can get him out of there.

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

I find this post distressing because it implies we should fear our medical professionals and facilities.

While there are "bad apples" in all professions and the general public, we each have a responsibility to manage our own care.

If we vehemently disagree with the care being given, it is our responsibility to do whatever necessary to correct the situation immediately, not days later or after it is too late to correct.

Are mistakes made by doctors, hospital staff or others?  Certainly it happens.  They are human beings, not gods.

Let's not forget, the patient is the one in control as long as he/she is deemed capable of making competient decisions.  If they need or have a Medical Power of Attorney then that person is in charge under certain conditions.  It is not unheard of that the patient will make decisons regarding care in a terminal situation which may be counter to that of a spouse or family opinion.  The medical team is bound to follow the patient's directive, not that of any other.  When the medical condition eventually renders the patient unable to make further decisons, often the family will try to over-rule previous decisions made.  That will not sway the medical team if they have the proper documents signed by the patient.

Hospitals are for rendering services and care which can medically improve the patient's condition.  Rehabilitation facilities are an interum stop between hospital and home to insure the patient is physically capable to deal with the home environment.  Nursing homes are for those whose conditions require long term medical care which cannot be provided at home, but which does not require hospitalization.  Hospice care provided in the home, nursing home or stand alone facility is for those who are terminally ill and require comfort care to insure they are not in pain and kept as comfortable as possible.

Each type of facility has its own rules which govern when a patient should be transferred elsewhere.  Once the attending physician deems there is no further benificial treatment for the patient, it is unreasonable to think that a patient should remain in a hospital for months if all they require is comfort care.  At that point there are two choices...find another doctor with a differing prognosis or work with the medical team to find the approriate facility.

Do the insurance companies and federally funded Medicare and Medicaid organizations have an impact on the care we receive?  Yes.  Is it financially motivated?  Yes.  Can doctors "work the system" if they feel something is medically necessary?  You bet.

I refuse to believe that the medical system is out to T4 patients.  I spent the last 13 months dealing with my sister's terminal illness.  I kept myself informed of her condition, tests being done, options available, care being given by the doctor and hospital staff, and Hospice staff.  Did I ever question what was being done or not done...sure...because unlike some I don't believe that any one person can know everything...even if it is their specialty.  Was my sister treated with care and respect to her wishes?   You bet.  Did I make sure every step of the way that those giving her care knew exactly what her wishes were?  Absolutely.

The patient and their caregivers have to be the advocates for care, whatever level that is.  That is our responsiblity.  If it isn't happening then we must do, as Uncle Buddy, and move up the chain as fast as we can to protect our loved ones.

Marie who loves kitties

 

 

 

 

 

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

I can't really say that my brother's care is poor. I feel that they saved his life. My issue is the lack of communication between the staff and family. I brought in all the paperwork day 1, but they still seem to miss it. There will always be one or two who aren't meeting your expectations, but for the most part, I feel he is getting adequate care from this hospital. I could tell you some great stories about his surgeon who spent 90 minutes on the phone with the insurance company to fight for rehab for my brother after his surgery. I've had many more positive experiences with doctors and hospitals than negative. We're just having a run of poor communication right now. It's still pretty serious stuff!

Lin

PS Thanks for the sign idea! Neon pink, I think, will be the color!

mags uk
Posts: 9
Joined: Mar 2013

UncleBuddy,

I understand your issue. My sister works as a nurse in the learning disabled sector and she is currently being trained in conjunction with the local hospice to creat and develope skills in this field to ensure the patient is represented well and able to express their views particularly when there is no family representatives. I think communication is where most issues in health care occurs and particularly where there is tight time schedules for staff but in your case it does seem that your wishes to be consulted have been over looked. Have you considered leaving a written note above his bed to ensure the communication gaps are filled. I also understand that it is not a clinical issue just doing a fantstic job of being a brother.

Our Doctors hold meetings where they too do reflective learning and present cases where improvements could have been made. Is this included in your system. They have been fantastic with my mother but they too feel systems can be improved but this does not lessen my trust in them.

Regards 

Mags

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm not sure what the hospitals do. I've been involved in my brother's care for the last 2 1/2 years since he was diagnosed. I would think they would try to make things easier for the disabled and their families, but I'm not seeing it yet in this particular hospital. He has been in two other hospitals where he and the family have been treated with a lot of respect and kindness, but this was an emergency, so he was sent to another hospital for surgery. Marie did suggest a note above his bed and on the door. I have a big, hot pink card that I am placing right above his bed. He was moved into a double room in the oncology unit, so I didn't want to put it on the door. I will see if I get resistance from the staff, but I hope not. Thanks, guys, for the idea.

Lin

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Marie, while I don't want to upset anyone, I believe it is important to describe and identify realities.   Some of this reality is the difference between public image, like retail brands that attempt to create a simple, smooth, seamless message for a fixed product, vs, sometimes, the chaos or poisonous politics in their workplaces like Dilbert where there are a few more product possibilities, even wholesale prices.  

Walking down the retail store aisle, money in hand, is much different experience than walking down a hallway of a corporate snake pit, competitors, or rubbing one's heresy up against another's dogma.   Dealing with some of these problems is like dealing with a pervasive authoritarian government, say like East Germany 50 years ago.  You individually cannot realistically change the system or even demand some illusory promises, you may have to escape to a new system, and further, the current providers may penalize or attack if you try.  Not all, but definitely some, where one bad encounter anywhere along the line can even be fatal.

In any insurance or medical system, the goal is to keep money flowing in, and with varying degrees of aggessiveness, cut costs.  Ahem. In either profit based or  heavily socialized systems, penalties can be automatic, they've already got your money. 

In our journey, I've identified different sets of answers.  Some of those answers were not commonly known or accepted in conventional or US medicine.  We've experienced different reactions from different suppliers, doctors and nurses.  I am enough of a geek, I can do much of my own research, measurement and decision making.  Some providers are helpful and cooperative, perhaps up to a point.  Some are reticent but workable for a specific task.  Some are rigid and likely to obstruct, sabotage or attack you, no matter how much technical reference or demonstration you can provide.  Unfortunately, it is often hard to find out ahead, who is who.  You have to engage with them to find out, and be prepared to maneuver.  

The major elements of their control include our inexperience and ignorance.  If you are (kept) unaware, you are more likely to have to go with the flow, their sales plan.   There are various means to overcome this, including consultations with independent views, research, forum participation and direct medical hires.  Ultimately, success is not winning confrontations, but avoiding them, and reliably achieving bigger/better goals, again and again.  Not just one and done. 

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I mean, I can read the words, but I literally don't get what it is you're trying to say, Tans.

I guess all I can say is that my HMO has spent close to a million dollars on me (and thankfully will get to spend lots more, now that there is no lifetime cap).

I'm alive because of this vast amount of money that they have spent on me, especially with regards to my multiple surgeries.

It's an imperfect system, muddied by the profit motive, but it's also a hell of a lot of dedicated doctors, nurses, and other hard-working people who do their very best to keep us alive.

Obviously, there are many improvements that could be made, and not every person involved is perfect (in my perfect medical world, that cranky night nurse I got on several occasions would be demoted to toilet cleaning), but this system still saves lives on a daily basis.

AA

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

I was afraid my age was showing when I too could not determie the meaing of his second entry.

Marie who loves kitties

 

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

I though it was only me thinking...huh?

Tina

mags uk
Posts: 9
Joined: Mar 2013

Sorry Uncle Buddy that should have been a wonderful sister. I should  have read your post a bit closer. I hope the "visual aid" works for your brother as it would be so much better coming from family.

Tina, Maria and Anne,

My understanding is that the post is to discover how to productively handle infrastructures to enable representation of your needs if you happen to fall into that small category of patients who have not been able to access the right resources. My own mother had a tumour that was resected right through the middle which require her to make a decision on how to proceed in the light of this. These can be very real issues. I am glad that your issues were more personality lead however at times when decisions have to be made quickly and guidence sought it can be helpful to draw solutions from others experiences. But perhaps understanding comes from being placed in the small group that have to navigate such waters. 

Hope that helps you all,

Mags

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

is taking the experiences of, as you say, a "small category of patients", and then inflating it into an indictment of the entire medical system.

Those experiences should definitely be taken into account, and used to make improvements, but one needs to look at the experiences of the majority to get a good sense of how the system works as a whole, imo.

I should add that my comment about the nurse was a joke.  I had several challenging situations, inlcuding months of mis-diagnosis, as well as having to argue (and threaten suit) in order to get a PET scan, after CT scans had been proven worthless for my particular case.  My experience has not been perfect, but that doesn't lead to me to conclude that therefore the entire system is broken.

mags uk
Posts: 9
Joined: Mar 2013

I think its great that you have a broad opinion of health and the people who work in it. And I say that sincerely with vested interest as a health professional married to a health professional in the great field of cancer care. So I do have an over view but I have an interest in making systems more accessable and thought that was the core of this thread  and feel that does not diminish ( or had better not) the quality care that is currently being experienced by the majority and it is very important to have that focus as you say.

I took your post about not understanding at face value hence the reply but I will bow out now as I am quite a relaxed person and whilst I would never be a gatekeeper to discussion neither would I wish to make others feel uncomfortable by pushing a discussion.

I will give your thought some contemplation though as I am always open to different opinions.

Thanks again 

Mags

UncleBuddy
Posts: 1019
Joined: Aug 2013

I originally opened this account in my brother's name, feeling it was he who was sick. My children call him Uncle Buddy, that's where the name came from. I am the sister closest to his age and love him dearly. Poor guy has been handed such a raw deal. He had NHL in 2000 and kicked its butt, then rectal cancer stage 2a in 2011, now stage 4 in 2013. It has been a roller coaster ride, especially with his disability. 

I think there will always be good and bad in any field. I have seen both sides. My brother's oncologist was able to get him free chemo as a "charity case" because his insurance that I got for him and he is paying through the nose for, is sub-par. I had no idea that it didn't cover a lot of things. He is in the hspital now going on almost 2 weeks, so I have no idea what kind of medical bills we will get. I will deal with all of that when the time comes. My main concern is getting people to tell me what is going on. My sister and I end up having to hunt down doctors and nurses to get information. I'm just hoping that my sign reminds them not to do anything without our permission. Time will tell...

Lin

Livingbyfaith's picture
Livingbyfaith
Posts: 56
Joined: Sep 2007

Well put, thank you

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