Protecting your "Continuity of care"

Pancreatitis
#1

While I wrote this specifically to Lisa, I felt that all of you could
benefit from the information. My fight with Kaiser continues day after
day and is the greatest stressor in my life now that I have cut my
mother and brother out of my life. Here is the letter in full:

Lisa,

I talked with my GI, Dr. Mary Pat Pauley, who works with Kaiser on
Wednesday evening. She called me to see what she could do for me as
the result of my overall complaints regarding my health care, whom I
should be contacting about it, and my request to have a single doctor
who would be “responsible” for my care overall. She does not
understand my continual ailments and complaints and is also against
TPN as a method of therapy. She has made this clear i the past as well
as during our conversation.

I was wondering if you could share more with me as to how TPN helped
your overall health or did not help. I need this information for my
future “arguments” with Kaiser.

You may wonder what has brought this about. Well, my new PCP told my
infusion pharmacist last Tuesday, while the infusion pharmacist was
seeking to get permission to change my infusion formulary to include
more insulin, that she (my PCP is a woman) forwarded my case over to
the GI department. As a result, when my infusion pharmacist called
over to the GI department, they had no records as yet of the transfer
and she had no one with whom to confer on my infusion therapy. This
was an extreme lack in my continuity of care which, after looking at
my records for the past 13 years, has been the case since that time.

How am I going to try to keep things in order when everyone changes it
all of the time? Well, I have decided that I shall ALWAYS take a tape
recorder to EVERY appointment with ANY doctor whatsoever. Should they
not agree to have a recorder there, I will ask what they have to hide.
If they continue to refuse, the appointment wil be cancelled
immediately and I will seek an appointment with someone who will.
Apparently, so much of the problem with my medical care has been a
built-in system of “plausible deniability” in which doctors do not
remember what they actually said in a meeting or that it is my word
against theirs. This is the only way that I feel that I can counter
this continuous fiasco with my health care.

I will also post this with CarePlace so that others may learn from this.

Anyse Joslin

#2

Here is a message that I am definitely considering sending to Kaiser Member Services should things not get settled soon or should things go back to the current state again:

Kaiser Member Services

This is a “cry” for help and not a threat. Everything that I say below is “fact” and definitely should be considered seriously.

I have made two decisions regarding my “lack” of quality health care management by Kaiser for about 10 years now. After noting a pattern of “plausible deniability,” I have noticed that many of my problematic care is being farmed out to others without notification by my previous and current PCPs so that I have never known with whom to really consult regarding my complicated chronic care needs. Also, other subsequent providers of services don’t know whom to call or with whom to consult in most caregiving or ongoing care services.

The first decision is that I will take a voice recorder with me to EVERY appointment or consult with any physician or representative affiliated with Kaiser from this day on. Unfortunately, in order to show no bias as to whom I will record, this will include others who really don’t deserve this treatment and I hope that they will bear with me in my concerted actions upon all rather than a discriminatory group. I will record ALL and, should they ask me not to record, I will ask, “What is there to hide?” Should any person persist in my not recording the session or appointment, my appointment or session will be stopped immediately and another appointment will be made with someone who will allow the recording. If no one will allow recording of sessions, I will have no other recourse than to seek representation by an attorney. I will also seek out the public to follow this same procedure so that you will be inundated with not only my litigation but also a class action suit against Kaiser in general.

[Note to Forum members: ALL of us should do this from now on, no matter who are health care providers are!)

The second decision that I am making, with complete rationality and a clear mind, will be to end my own life while indicating that my overall “tiredness” and lack of a will to live is due to the overall frustrations that I have encountered day after day with each dealing with Kaiser medical personnel, representatives, etc. This has been a 10 year battle so far and I really am “tired.” Tired of fighting for any amount of care that is deserved. Tired of having my family put through the pain, stress, frustration, anger and fighting with Kaiser over continuity of care that should be a “given,” a “right,” per my policy with Kaiser and per medical ethics. Tired. Just too tired to fight anymore to put myself and family through the stress that makes my disease and condition worse rather than better. Stress that, ongoing in perpetuity, can only result in just “giving up” entirely, which I would only perceive this as the primary purpose of all of this stress, frustration and lack of continuity: Kaiser wants me to die because I am too much of a monetary liability to care for anymore.

[NOTE to form members: I firmly believe in rational suicide, as some of you already know, so this is not an empty statement at all!]

What is going to happen and when? It is in Kaiser’s hands, not mine.

Karen Joslin
Med Rec No: 02381027

#3

I’m so sorry for your frustration Anyse, believe me living like this is a burden. That you would make a statement like that for a medical community that won’t listen anyway seems tp me to be a horrible waste, but your choice is your choice. You have a lot to give and I know you help others’ stay strong through the strength you pour out through your writing and posting on theser pages.
Juliette is ion ICU, she got a fungal infection in her pic-line and then came down with acute resperatory distress syndrome, she has been on a ventalator since Sunday. Please include her in your prayers. Sorry I haven’t posted lately, but my hands have been full. God Bless you all.
Jill

#4

Jill,

I am so sorry about Juliette. That is horrible. I now that once one
gets a fungal infection through a PICC line or through a central line
(like mine), it is usually when they will no longer insert any more.
That is what I was told by one of my “many, too many” doctors. I will
keep her in my thoughts and hope that all comes out well for her. I
feel for your won pain through this as well. This disease is hell for
those who have it and the loved ones affected by it. I, too, know this
all too well having seen my own family on this roller coaster ride of
illness and despair.

Take good care of yourself as well, OK?

Anyse

Anyse Joslin
anyse1@mac.com

#5

Since I am an open book as to my improper health care, I have composed this letter to Kaiser (where is not yet determined as it is so good that I may take it to an attorney!) as follows:

ARGUMENT FOR CONTINUITY OF CARE AND CASE FOR
THE FACT THAT KAREN JOSLIN (MR#: 0238927) HAS
NOT HAD THE BENEFIT OF SUCH CARE FOR YEARS

Per a conversation with “Naomi" at the Infusion Pharmacy on Arden Way on November 6, 2007, at 10:00 AM, Naomi discussed with me the option of adding additional insulin into my TPN formula so that I could get my current average blood sugar test numbers down from 223 to a more workable 170 average. I had already discussed this with my dietician, Gina Spano, from the Morse Avenue facility the previous day and this is what prompted the call from Naomi. Naomi confirmed my discussion with Gina Spano, and told me that she was going to contact my PCP, Jennifer Choy, whose office is in the Rancho Cordova Clinic. Naomi told me that, upon getting in touch with Dr. Choy, she was told by Dr. Choy that Dr. Choy had referred my case over to the GI department. Upon calling the GI department, there was no record of this transfer of responsibility and no record as to whom it was transferred. As a result, this change in my TPN could not occur and, as of yet, there is no one who is taking the “responsibility" in the GI clinic at the Morse facility. This change cannot occur until a doctor will authorize it and, given my past experience with Kaiser, I will certainly not expect to have such authorization anywhere in distant future!

When I met with Dr. Choy on October 4th, the appointment was to occur from 1:50-2:20 pm. However, it began at 2:15 pm and only lasted until 2:30 pm. I was told that the reason for an half hour appointment was to “meet my newly selected physician and to discuss issues of great concern to me regarding the management of my care I came in with four primary concerns as follows:

  1. I needed to have a “focus" put in my file so that, should I have to go back to emergency for my usual illness, an attack of acute pancreatitis, I would receive appropriate care as well as expedited treatment for my illness so as to quickly reduce my pain (with 4mg injections of morphine as needed) and infuse me with necessary liquids (through an IV of a saline drip with potassium added);
  2. I needed to have her pre-admit me to the hospital for necessary re-hydration, IV as indicated above, pain medication, as indicated above, and to be kept NPO from 4-11 days as necessary;
  3. I requested that the “drug seeking behavior" be removed from my medical records or made no longer necessary;
  4. Finally, I needed a doctor who will manage my overall care because my chronic health problems are complicated and who will work as my advocate for needed care and help as time went along.

Her responses to each of these requests were as follows:

  1. She refused to do this or even to entertain the notion at all.
  2. She refused to do this or even to entertain the notion at all.
  3. She refused to do this or said that she could not do this at all and did not offer me a means or course of action to have this done.
  4. She was not very enthusiastic about this at all.

Finally, during the course of this very brief meeting, she acted as though she had to be somewhere else all of the time and did not seem to really be interested in any of my concerns whatsoever.

Her referral of my TPN oversight to the GI department without even informing me or even allowing the time to pass before it could be transferred such that other professionals could not make proper and timely decisions and changes to my TPN regimen was, at the very most, less than professional and demonstrated a lack of her duties to the patient to assure continuity of care which, I believe, is also unethical.

As I need a doctor to oversee all aspects and portions of my medical care as well as managerial procedures to alleviate constant medical problems with getting proper and quick care or records taken care of as well as affecting my not knowing who is responsible for my care at any given moment upon doing so, Dr. Choy is incapable of handling my medical care whatsoever.

Now, this is only ONE action that has occurred since I have been in touch with Kaiser Ombudsman, Jeremy Hollinger, as well as the COO of Kaiser, Morse, Beverly Weantz. There has been a consistent history prior to getting this “new physician" with Dr. Alocozy and the one before him, Dr. Linda Berliuk. I also had an incident on August 20, 2007 with Dr. Brown of Interventional Radiology in which he, himself, told me that he was putting in a dual chambered Portacath and put in a Hickman instead without my permission to change this order as well as another “serious" error during my admission of May 2007 in which I had a very serious response to dilaudid such the my blood pressure had dropped drastically low and I had lost all comprehension of what was happening to me and my family was not informed per hospital policy that “the patient" spouse will be informed of any serious changes in the patient’s condition. It is unfortunate that such “lack" of professional, ethical, and responsible care as well as keeping my own spouse out of the loop as to a serious change of condition has occurred. However, this is far less than just the “tip of the iceberg" in my overall care.

Added to so many errors in care alone, there was discrimination against me for being a “transsexual" on EVERY occasion in which I used the ER over the past 8 years or so. Also, one of your employees also changed my Kaiser card “gender" designation to a 0 (zero) due to my transsexualism, which further flagged the overall discriminatory practices of the ER for a few years. With this “notification" in my record, I was never asked if I wanted a private or non-private room such that, were I allowed to choose a non-private room, I would not have been exposed in my fragile state of health, to as many as 37 hours to whatever diseases walked into and were placed in the same area as I was. This is an unacceptable as well as cruel punishment for my sexuality, which is private! On top of this, there has been a flag for “drug seeking behavior" in my file that further called my illness, character, integrity and honesty into question. Together, these three things created an environment among treating professionals to doubt my complaints and also to proceed as they ought to have done in terms of my overall care.

#6

Hi, Anyse…

It was good to talk with you last night and I saw this email from you after we had ended our call. I haven’t been up to checking more than once a day or so lately.

I’m very concerned about you and how you’re doing, as well as your suicide plans, but will opt to address this more in reply to your post so hopefully those responding to you can benefit as well. I’ve been very sick today and can’t do much more with it tonight.

I hope you have a good night and will consider what I’ve said before (both by phone and through the forum) about your suicide intent. There are a number of CarePlace members who have contacted me (their identification will stay anonymous out of respect for the privacy of their messages) asking what to do and feeling they will be responsible in some way for your decision if they don’t do/say the “right” thing for/to you. I’ve encouraged them not to take that on, and explained that regardless of how unfortunate and angry of a decision suicide is (in addition to the overwhelming feelings of hopelessness and helplessness you are likely feeling), that it is not another person’s fault if you chose this unnecessary act as a response to your illness or frustration with services or anything else. I know you’re aware it’s your own decision, regardless of what others think, but I really feel it’s unfair to involve others, attempt to draw them in (even subconsciously), or in any way indicate that they may be the promulgator of any “final” act you chose in your life.

Ironically, I just addressed the issue of suicide and depression in pancreatic disease in my recent blog entries on my site. You’re not the only one feeling that way, Anyse, but you do appear to be involving many others in your decision and plans-- even by posting what you have several times, it draws others in. I think if you were asking the group for help with how you’re feeling, that would be okay, but several people are left feeling responsible, and I consider that a form of “hostage-taking,” as insensitive as that may sound. I do care greatly about everyone in this world… everyone, but I also recognize human limits, and while I’ve personally done several things already to assist you with these feelings and plans, when you tell the whole group that you’re “going to do it” in one way or another, it unfairly involves them in your planned death, whether that was the intent or not. I’d encourage you to please, please talk with any of the professionals you’ve been provided, but to be careful about enticing others from this group into concern or elements of your plan. Nobody on CarePlace wishes you anything but a “good” way out of this pain and disease-- and while others may share your feelings about suicide, I will maintain that it’s not a viable option, regardless of how desperate one feels.

I do wish you all the best, both with your care, Kaiser, your pain, and your reaction to it all. I do know how horrible it can feel and having been on that edge before, having also counseled many clients through depression and suicide, I can only encourage you to not chose death as an answer. I’m always there as much as possible to help you or anyone here-- and I hope you know that. Again, as I’ve said before, any loss of life is a loss for everyone-- not just yourself, and is very tragic.

I hope you continue to seek out the assistance you need, be an advocate in your healthcare and life, and try focusing on something that “is” going well for you-- there’s always something, as small and discrete as it can seem at times. Anyse, I really feel you’ve opened up the door by posting the email earlier today. I’m not sure if maybe you are looking for a reaction from someone, or if you’re desperately reaching out for help… but I feel strongly that I’d do anything to help save a life by suicide or any act… and I feel I need to let you know that if I’m ever aware that you have an immediate intent to cause your death or harm yourself, I will do what I can to employ professionals in your area to intervene. If this ever happens, understand that it’s out of love and caring-- about life and about you. Again, I truly hope you’ll reconsider your plans and speak to a professional about this.

Hugs, love to all, and many good wishes for a peaceful night–

Lisa

(Please note that I’ve been having internet connection issues and just got back online, so I’m sending this on the 11th. Anyse… just as a side note to your most recent post, I always, always have to ask for a private room. I’ve never been asked if I wanted a private or semi-private, so it may not be anything personal. Just ask for what you want or need-- you might alleviate at least one of your problems by making the request up front.)

#7

Hi Anyse,

?

While I see you’re calling this a cry for help, I do implore you to reconsider the suicide decision. As a survivor of a family member who has committed suicide, it does not solve any problems but leaves those who remain with many issues and problems?that can and will linger for the remainder of their life. While it is your decision, and yours alone, it does sound like you’re trying to also blame Kaiser for part of?it. Life is what you make of it and to let them determine what you do is giving up on?life as well as your family.

Dave

#8

Everyone:

If I have caused you to falter in communication with me due to other
postings regarding suicide, I apologize profusely. I shall cease and
desist from discussing this topic as I have learned that it is
disturbing to others here and, believe me, nothing that you do or do
not say to me will ever effect me in a way to do such a thing. I wish
that there were a way to discuss this openly and rationally. However,
it is such a sensitive as well as “hot” topic for many. As a result, I
shall not say anything about it at all unless I am asking you for help
in the future. Therefore, you will know when and what to say to me
should I be in actual despair or depression.

If any of you are interested in my thoughts on this topic, I refer you
to “finalexit.org”. This is where you can learn from others about my
views and reasons. Please, look at this as objectively as you can. If
you have any questions for me, feel free to ask, either here or at my
own personal email address (anyse1@mac.com).

Again, I apologize for any confusion or accidental involvement in my
own ideas or feelings.

By the way, my TPN therapy has added 20 lbs. to my weight, the
nutrition in the TPN is helping me to feel like a human being again,
and I am healthier now than I have been in the last 11 years! I am
still bedridden as my body is still racked by the vertigo and nausea,
but I am very happy to feel so good lately most of the time. My pain
is under control with little need for additional breakthrough
medication (liquid morphine). Now, we have to see how long they will
let me stay on TPN. I am suggesting a year but my doctors are not so
hot on the idea of me having it at all. I almost feel guilty to say
this as I know how much so many of you are suffering. However, for as
long as I have TPN, I am sure that I will feel this way and I dread
the day they force me off of it.

Anyse

#9

Dave,

Thank you so much for your concern as well as caring reply.

No, I am not trying to blame anyone really. I simply was trying to
point out that each person has their own limits to the type of care
and actions that Kaiser has done for the past 10 years as I now have
the documentation to prove it.

By the way, I did not send it to Kaiser after all. I will continue to
work through some avenues that I have established since September that
are, so far, working well. My doctor was told that she should notify
me of her actions herself as well as providing me with a rationale for
them so as not to appear to be “abandoning” me.

All in all, I am really tired of how much work even simple things take
and all of the frustration, stress and agony that I have to go through
for each and every little thing that has to be done in order for mw to
have proper care. No one seems to actually listen; it appears that all
I get is lip service.

If there is anything that I may be crying out for help on, it is to
limit the stress that I have to go through with Kaiser’s shenanigans.
I don’t know how many of you actually have to fight for every little
thing so as to get proper as well as planned treatment. If any of you
have to go through as much as I, please share it as this is a great
place to share those frustrations. I just feel very alone in what I
have been going through for 10 years now, that’s all. I guess that
this is as simply put as I can make it.

Again, thank you for your caring as well as questioning so that I can
actually get to the point of what I am really trying to do. I think
that this has helped me to clarify it for myself as well as for all of
you.

I love the help that we all get here so much as well as the camaraderie.

Love you all,

Anyse

#10

Thank-you, Anyse. The one lessomn that I can share with you reguarding the TPN, this is what Juliette’s pancreatologist said, is, because the sugars in the TPN are so high, a pic-line, aor a porta-cath placement with TPN is like playing Russian Roulette, and Julie alsmost losty her life as a result of it, by getting sepsis and the resulting ARDS. What are the alternatives? I donb’t know. Right now, she has a tube in her nose, and that doesn’t look very comforable to me, and that is the understatement of the year. She has so far survived, but top what kind of a quality of life, I don’t know. The breathing tube was removed yesterday, and I should be jumping for joy, but I am so weary. The doctor at the intensive care department told me I am addicted to uliette and shew is addicted to medication, and I should go to 30 Alanon meetings in 30 days. How is that going to get Julie well, or at least at a point that she will be able to find any happiness in life. I am feeling sich myself. I have liver diesease, and I need to get my enzymed checked, as well as osteo and rheumatiod arthritis. I hate to complain when she is the one that is so sick, but I am feeling as theough my life is becomming forfit to this diesease, and I feel sick aqnd do not have time to take care of myself.

#11

Hi JIll,
Please tell the doctor in ICU that yes you are addicted to your daughter-that’s the job of a mom, especially when their child is so sick, as Juliette is. Ask him if he would like to trade places with you for a while to see if he could do a better job!!! I would have had that doctor taken off her case-all you are going through and he thinks thats going to help you.
I’m so sorry Juliette is not doing better all around-she has suffered so much(as have you)-and it gets harder and harder for her to make herself feel she will get better. The one piece of advice if I may give you would be if you could find someone close to her age who has been through a rough time, to sit with her and talk. Just the two of them-sometimes the teen years need others who have suffered to see it’s not just them. My daughter lost almost all her friends during the hard times because they didn’t want to be around sick people. Very selfish time of life. But when she found other young people who had been through some rough times she herself opened up.
Please take care of yourself and call if you need to talk or vent.
Terri

#12

Pippy,

While I may feel that the doctor has a lot of moxy to tell you to go
to 30 al-anon meetings in 30 days, I can agree with the intent that I
can conjure up from it. You HAVE to take care of yourself or you will
NOT be able to take care of Juliette! You, my dear one, are suffering
from what is called “caregiver’s burnout,” which is very destructive
to you and, unfortunately as well as ultimately, destructive for the
one you are trying to take care of.

Go to the doctor and get what you need done done! Juliette will not
die if you do other things for a while that don’t include being there
for her at every possible minute of your time. You may be, and this is
really important, may be communicating to her that she can not be
taken care of by anyone else or may even be undermining you doctor’s
"street cred" with Juliette such that she will not trust him or the
nurses. This type of situation is very complicated as we each put in
our own parts into the care for our sick loved ones and sometimes we
need to let go for a while. How much of your day is being spent with
Juliette and how much for yourself? You need this balance so that you
can model it for her for times that she may need it when she grows up
and may have to deal with her own or other’s illnesses in the future.
Letting yourself go in favor of only taking care of her is not a good
model for her to learn from. Do not take this as negative as I really
do know how you feel and that you are devoted to her. Just that too
much of anything is not good for anyone.

Make appointments with your doctors tomorrow and start taking care of
yourself. Evaluate your responses and how much time you are spending
with her and the subtle or not so subtle message you are sending to
her in you actions and reactions to her illness.

I am always hoping for the best for both you and Juliette. Know that
my heart is in the right place here.

With honest love and care,

Anyse

PS: Juliette is NOT addicted to medication; she needs it!

#13

Pippy,

I have to agree with Anyse on this one. You are not doing your daughter any good by not going to the doctor and getting yourself taken care of. Has it occurred to you that she may be worried “sick” about you? Even if you haven’t said anything to her, kids are not dumb. They can see when you aren’t doing well. So do yourself and your daughter a favor and get thee to a doctor!!! You won’t be doing her or yourself any good if you collapse and end up in the hospital.

In the meantime know that I am still praying for you and all our friends at Care Place.

A prayer from Psalm 40:1-2

Lord we wait patiently for You; turn to us and hear our cry. Lift us out of the slimy pit, out of the mud and mire; set our feet on a rock and give us a firm place to stand. Put a new song in our mouths, a hymn of praise to You our God.

Thank you that Juliettes tube has been removed from her nose. We ask that you would give Pippy the strength, courage and determination to go to her doctor and receive the care that she needs. Thank You for the work of Your mighty hand. In Jesus name - Amen.

Pippy, remember that we care about Juliette, but we also care about you. Take care of yourself.

Keep the Faith and God Bless,

Vonnie

#14

Actually, I am taking some of the docs advice, at least I am going to my own doctors appointments, but the things I need to do for myself will completley debilate me. I can’t go and have another spine surgery right now, not with Julie in the hospital, but I have resolved to get the rest I need and to make it to my own appointments. As far as 30 alanon meetings in 30 days, I have my own 12 step meetings, though for a caretaker as I am, I am going to CODA meetings and incorperating it into my own program of recovery. I’ve been around 12 step recovery for 14 years, and do recognize the importance of taking care of self, I was doing CODA before she sugested it. I don’t get this woman. Maybe someone can explaqin. Yesterday, she had to put aq tube down Juliette’s nose into her stomach, and Julie asked for sedation, she is breathing well enough to get it. She didn’t allow any sedation and did nothing to make her comfortable, she said it wouldn’t bother her at all, that it would just take a second. They had to put the tube in because Julie vomited and they didn’t want her to asperate (BREATH IN THE VOMIT) THAT MUCH i GOT! It was horrible, it would have take 10 people to hold me down, she was begging them to stop. After the procedure, I was angry, I asked why she didn’t sedate her. The doc told me Julie had to face her diesease?!!! She has to suffer more?!!! I don’t get it? Do you. Thank-you Anyse, I do understand what your saying, but I am not there 24-7, because my own health doesn’t allow itr, I’ll end up in the hospital, I’m there about 5-07 hours a day. I can’t see how that is unhealthy.
Jill

#15

Anyse
You have so much to offer to this group, and I am sure your lovingness and your giving soul, as well as the raw intelllect that goes with all that is you extends beyond this group.
There have been times that I have wanted to end this life as it has not bewen very easy to me, and I would like to share with you the one thing that has kept me from that last resort.
I have taken a lot of religions and mixed them into my own beliefs, and if there is reincarnation, I want to learn what lessons I need to learn in this life, as it seems to me there are a lot, and move on to whatever is next. As I have said this life has had many obstacles and pains for me, both physical and mental. I certainly do not want to do this again, and if there is any validity to this belief, I don’t want to take any chances on repeating the heartache and sickness I hacve sufferred. That may not be very retional, but it makes sense to me.
Jill

#16

Pippy,

I hate to tell you this, but there is no “comfortable” way to put in
an NG tube. I had three or four of them during my 10 month stay and
they all hurt like the dickens. I hated it so much. I had so much
"gunk" going into the collection container. I never knew that it all
could lok like that *yeeech!" Also, Juliette is 18 or 19 now and is a
grown woman now and that may be what the doctor is really addressing
with her negativity. She may be jealous because she never got that
kind of attention and care from her own mother in the past. I am sure
that the doctor also feels somewhat overwhelmed with dealing with
Juliette because such cases are neither easy nor do they always come
out with the best results. Relax a bit and do the pledge, you know the
give me the strength and the wisdom. I sense a lot of tension is going
on in that room and were I you I would try to ameliorate that as much
as possible for your daughter’s sake as well as your own (and, as a
result, for the doctor as well).

Thank you for the nice email as well as the support that you gave me.
We are all here to help one another.

Anyse

#17

Everyone,

As usual, my struggle with Kaiser continues and my latest grievance will follow this introductory paragraph. So far, as a result of this grievance below was a call from my GI asking me to talk with her a week ago Monday. I called back the same day, telling her assistant that I will be home for the rest of the week and am available. Well, no return call on that. All is currently stagnant. I will, more than likely, be off of TPN as of Thursday morning. As am now down from 2000 cc fluid with TPN to 1000 this week, I am having to rely on my own intake to stay well. I am already, for the past 3 days, having pancreatic pain up to “7” on the pain scale for many hours at a time. I began my “7” last night (Sunday) and it has continued into tonight with no letting go. May have to use my liquid morphine. Here is my letter and, please, tell me what you think about it, OK?

Kaiser Foundation Hospitals
Member Services

Re: TPN and Proper, Professional Medical Care

On August 22, 2007, I had placed at my right upper chest a Hickman central line for use with TPN, blood draws, radiological testing, and any further need for IV infusion during any future hospital stays as I no longer had the ability to provide venous access for these procedures and testing. At that point, all they could find, after four or five IV sticks, was a vein for a pediatric venal insertion for an IV. Prior to this stay, I had 3 hospital stays since April of 5, 11, and 11 days as well as 2-3 ER visits for pancreatic pain and the need to be NPO so that I could get the bowel rest (more particularly for me was that I would get gut rest so that my pancreas could rest and get better). After the placement of the Hickman (I was told that I would have a dual chamber portacath before entering the angioplasty theater by Doctor Brown, wherein he lied to me and put in something that I did not approve nor was asked to approve during the procedure), I was then faced by Dr… Wong, who took over my case from Dr. Apostolakos, and his overall disapproval of this procedure as well as my going on TPN. I left the hospital on August 25 on TPN. There was no plan, no guidelines, nothing to determine the stoppage of TPN or for the removal of the Hickman port.

Since that day of the Hickman placement, there has not been ONE doctor’s appointment for health examinations to determine the level of my overall health. (I did see Dr. Choy on October 4, 2007, for a “meet and greet session” wherein I was supposed to be able to address my concerns about my health care and treatment as well as any issues that I may have, in which none of this really occurred on a substantive level). NO guidelines were set as to what would be the criteria for the stoppage of TPN. Furthermore, there were no examinations made to determine improvement or deterioration during the entire time that I have been on TPN. However, although I knew the risks for being on TPN with a central line from the beginning, all of a sudden there was a decision made to take me off of TPN. This decision was not made on the basis of my overall physical health (there were no physicals, only blood tests every week). Instead, it was based on the overall fear of three doctors that I may become infected while being on TPN, a criterion that could have been used from the very first day of being on TPN, or the 5th day, or the 20th day, or whatever. I argue that this is an invalid way to make this particular determination as it is not at all objective and does not have anything to deal with my CURRENT health or condition. However, there were, again, NO guidelines to determine what would indicate that I should be off of TPN at all! Were this done in a professional and competent manner, I would have had at least a visit with the doctor each month (or even every two weeks) to ascertain my overall health each time and markers placed as to my overall health and whether or not we were reaching those goals. Hence, I feel that my overall care was reprehensible, leading to an uninformed opinion about the stopping of TPN with no PHYSICAL data used to make that determination (other than blood tests). If TPN is necessary for my overall health, then the risk of infection is outweighed by the benefits.

To relieve this situation, I am asking that I be seen once each month for the next two months while on maintenance TPN (12 hours per day) until they can actually ascertain my physical condition as warranting the stoppage of TPN. I would want this to begin on December 1, 2007, ending on January 31, 2008. I also want time to discuss any problems that I am having with eating or drinking fluids during this time so as to ascertain whether or not I would be successful in maintaining my health while off of TPN. Right now, I feel that I will not be successful as, before going on TPN, I was not able to take in the proper amount of fluids so that I would not become dehydrated. I, also, was not able to eat a proper amount of food as well as types of foods to keep me from becoming malnourished. I repeat, I do not feel or see myself as being successful in keeping proper fluid or nutrition levels that I will not become dehydrated or malnourished. I have expressed this to BOTH Drs. Choy and Pauley by phone and they have ignored or not addressed this issue at all.

Currently, even with TPN, I am unable to drink a proper amount of fluid. Also, I am able to eat only a very small amount of food. While my overall health has improved due to the nutrition that I am now getting with TPN, I do not feel that I will be at all successful while off of TPN and that I will require a least a maintenance level to stay out of the hospital. Right now, since I have been on TPN, I have set a three-month record of not having to go to the ER or to be admitted to the hospital for pain and dehydration. Right now, I feel that, “if it ain’t broke, don’t fix it!” If cost is a consideration, surely the cost of TPN is less than the cost of repeated hospitalizations.

Next, I was told that I could keep the Hickman line in until it is deemed no longer necessary. I asked Dr. Choy what those guidelines would be and she said that she would tell me on the phone at a later date. As I have been lied to too often by other Kaiser physicians, I made a written request via email for WRITTEN guidelines as to what would determine the removal of the Hickman line and the upper and lower limits of the time that it can be kept in should my health deteriorate after I get off of TPN. I asked for this on November 19, 2007. This request was written as follows:

I need to have a set of written guidelines that state under what conditions the Hickman central line will be removed. I know that I cannot eat well due to so many foods causing too many problems for me (nausea, pancreatic pain, etc. AND [the] resultant pain enough to lead me to seek hospitalization and gut rest NPO). I will need at least 4 months after cessation of TPN before I can feel assured that I will not repeat the cycle of pain and hospitalization that I have gone through this year alone. Also, I am adamant in my feeling that I should be on TPN for at least another 3 months in order to gain strength and stamina before having to go through this cycle again. At this point, while I finally have a bit of a respite, I also feel that this move to take me off of TPN is not only premature but also cruel.

Anyse

As of today, November 26, 2007, I have not received any answer or communication regarding this (of course, I am told that all email will be responded to in two days. In the past, I sent Dr. Choy two emails in the first week of October and, still, both have remained unanswered). Therefore, I doubt that I would get an answer at all on this request.

I have further complaints regarding my overall care while on TPN. While I was in the hospital in July and in August, MRI’s were requested as they wanted to get films on the status of my pancreas and other areas of my abdomen. During the July admission, they were unable to do an MRI because the only venal access that I had was a PICC line and they could not direct the 600 cc’s of contrast through a PICC line and I had no other vein that could be used and they could not put in a regular IV access due to no veins accessible at that time. During my August admission, another MRI was requested. The only IV access that I had then was a pediatric IV (that was all that they could get after 5 painful sticks) that was on its last legs on its 6th day of existence. Again, there was no venal access that they could use to push those 600 cc’s of contrast through. Since then, as it seems that an MRI was so important during both admissions, no one has requested an MRI while I have had proper venal access that can be used by the MRI technicians.

Finally, due to so many problems in the past with my care, I am requesting a highly qualified and trained medical doctor who will be responsible for overseeing all of my medical care and treatment. I need a “point” person who will be able to answer questions directly and honestly without attempting some form of subterfuge so that he/she will not have to answer questions that I have regarding my care and treatment at any time that it becomes necessary.

To summarize all of this, there has been far less than professional follow-up in terms of proper physicals (while only taking blood tests every week), proper diagnostics (no MRI), no guidelines as to the goals and to the time that TPN would be stopped, no guidelines as to what would be the criteria for the removal of the Hickman port, and no guidelines as to what will determine whether or not I will go back onto TPN if I am unable to keep up liquid and nutritional intake, as well as no doctor who can take charge of my overall care and treatment and answer questions that I may have regarding my own care and treatment honestly and forthrightly. To resolve these issues, I am requesting the following:

  1. Two more months on TPN with proper physicals with allowance for discussion about nutritional and fluid intake during treatment;
  2. Objective guidelines as to what will determine the stoppage of TPN that are not based upon a fear of something that was a part of the risk of placing a Hickman port as well as putting me on TPN in the first place;
  3. Objective guidelines as to what conditions will have to be met to determine the removal of the Hickman port;
  4. That proper radiological testing occur during the last months during TPN infusion; and
  5. That I have a highly trained medical doctor to keep oversight of my care in the future who is not biased and will follow or establish reasonable guidelines for my overall treatment and care as well as to be able to answer my questions regarding my overall treatment and care directly and honestly without having to resort to some form of subterfuge so as to avoid doing so.

Thank you very much for your consideration in this matter.

Karen Joslin

Thank you all so much!

Much love to all of you from the depth of my heart,

Anyse

#18

Anyse,

wow, you did a great job on outlining specifically what you need, it is my hopes that they will give you back written communication as expressed, not sure how you could be more explicit on your needs, i admire you and the drs need to see this as an avenue to a strong dr patient relationship, good job and hang in there, i know this is difficult as you continue battling this same issue over and over with them, but i would bet this time you hear something, what about sending a copy of this to quality assurance group? i have found here in ks if you do that i got a call from my dr 15 minutes after emailing to QA!!! he was not so happy with me but it worked and we got past it !

good luck and have a sweet day !
Julie

#19

Julie,

We have the same thing in California. However, I have to go through
the “chain of command” so to speak before I can contact them. I know
that our QA group here in Calif will not see my request as
unreasonable nor harsh and will also see that I am striving as a
patient to get my doctors to give me the care and respect that I
deserve as a patient. I hope that I do not have to go that far as it
will take a month to get there if I do things as required. I may be
able to trim some time off of it somehow.

Thanks for the feedback,

Anyse

I LOVE this place and all of the WONDERFUL PEOPLE here!

#20

you are a treasure to me ! take care dear and let me know how this turns out
for, maybe thats why i got into a little trouble, not following chain of
command !!! but i got immediate attention, thank goodness my dr loves me !