Hospital Threatening To Refuse Retarded Man DH

[Anonymous]

Hello,
I am the legal guardian of a 32 yr. old dwarfed mentally and physically disabled man who we have cared for 21 years. He has been on HD for over 10 yrs. and they say he is the healthiest DH patient they have. Problem this man is prone to behavoiral outburts. Even at 90lbs. he becomes incredibaly strong. We have been sedating him successfully but recently he has developed a side effect to one of the major sedatives. He has had outbursts at DH the past 2 times and had to be unhooked without receiving more than 15 minutes of DH. A meeting with this mans case worker and the hospital occured today. In short if he out bursts again the hospital will refuse to DH him again, ie: kick him out. The case worker asked today if peritoneal dialysis would be an option the nephrologist said no basing his decision on hygeine and risk of infection...sure seems to beat certain death if you ask me.
Can anyone elaborate on how easy it is to get an infection with peritoneal? I think I need a second opinion. Out man will die if something is not done soon! ops:

[Anonymous]

Hello,
I am the legal guardian of a 32 yr. old dwarfed mentally and physically disabled man who we have cared for 21 years. He has been on HD for over 10 yrs. and they say he is the healthiest DH patient they have. Problem this man is prone to behavoiral outburts. Even at 90lbs. he becomes incredibaly strong. We have been sedating him successfully but recently he has developed a side effect to one of the major sedatives. He has had outbursts at DH the past 2 times and had to be unhooked without receiving more than 15 minutes of DH. A meeting with this mans case worker and the hospital occured today. In short if he out bursts again the hospital will refuse to DH him again, ie: kick him out. The case worker asked today if peritoneal dialysis would be an option the nephrologist said no basing his decision on hygeine and risk of infection...sure seems to beat certain death if you ask me.
Can anyone elaborate on how easy it is to get an infection with peritoneal? I think I need a second opinion. Out man will die if something is not done soon! ops:

Oh my, this a tuff one.......

In my best judgement, strapping him for each therapy would be last resort......

Or, give him medical marijuana, hash........ 8)

[Beth Witten MSW ACSW]

Do his outbursts have any pattern? Does he have them when he has something to occupy his time at dialysis or do they occur when he's bored? Are they related to some fear that he has? Is it real or imaginary? Is there anything that anyone on the dialysis staff or friend/relative has found that reduces the outbursts? Does he have the outbursts at home as well as at the dialysis clinic? When was the last time he was evaluated during dialysis by a psychiatrist for behavior modification and/or adjustment of his medications?

If his dialysis clinic is considering terminating his care, what option(s) have they offered for his ongoing care? Are there other dialysis centers in the area that may be willing to accept him either for in-center HD or for home training? Where does he live? Does he have people there that would be willing and able to keep him clean enough to do PD and do it for him if he can't be trained to do PD and can't find an HD clinic to accept him? Has anyone suggested that you talk with the ESRD Network that covers your area. The patient services coordinator there may have some suggestions. You can find the Network website and contact information from the map and links:
http://www.esrdnetworks.org

In response to your question about peritonitis, some patients never get peritonitis while others get it repeatedly. It depends on how clean the person is and how well he/she follows the peritoneal dialysis procedure as to how easy it is to get peritonitis. The PD catheter area must be kept clean and dry. The peritoneal dialysis procedure must be followed in a very precise way (called "sterile technique') to avoid germs entering the catheter and the peritoneal cavity. Because the solution used for PD contains dextrose (sugar) and it's put into a warm, dark place in the body, germs that do get in have everything they need to grow. Keeping the germs from getting in is the key.

[Anonymous]

Yes, his out burts seem to cycle. We just added a new med to sedate him Oxycontin ontop of all the other meds. It worked Fri. and today. He recieved 2 blood transfusions on Fri. No there is not another hospital close by to take him. His nephrologist, Dr. Louis Reily, told the case worker he will not speak with me. He is being difficult. He told the case worker PD is not an option for our disabled man. I am going for a second opinion. Years ago he had a cathater in his neck for HD and nephorostomy tubes and was fine. I am so drained from dealing with this. Especailly since the hospital is posturing it's self as an enemy. What kind of Dr. refuses to speak with the gaurdian? This is all so exaspirating.
Thanks,
Cthreehorses

[Beth Witten MSW ACSW]

If you have a court document that states you are the patient's legal guardian, the dialysis clinic has to consult with you about decisions relating to the patient. In fact, you should be included in patient care decisions and be offered the opportunity to meet with the team (doctor, nurse, social worker, dietitian) to make sure that they understand your ward's situation and that you understand their concerns.

You say that the patient is taking OxyContin and that it has worked the last couple of days during dialysis. Does the patient complain of pain? OxyContin is a very strong narcotic that is used for severe pain It can be physically addictive. You said that his outbursts are cyclical. Do they happen away from dialysis too? Does he take OxyContin at other times or only at dialysis? Here's info on OxyContin from the FDA (http://www.fda.gov/cder/drug/infopag...ycontin-qa.htm).

I agree that you should get a second opinion and even consider a different doctor since the one you're dealing with now is not listening to you. After all, you are the legally appointed guardian of the patient. I'd also suggest you talk with the court that appointed you his guardian to ask what recourse you have when medical professionals will not communicate with you. Perhaps a court order or a threat of a court order might make them listen.

[Anonymous]

Yes I have court papers saying my husband and I are his legal guardians.
The hospital had a meeting a couple weeks ago. They called me the day before their meeting and the social worker told me to be there at 9:00AM. This was not possible as our disabled man is not picked up for program until 9:00 then I would need travel time to the hospital. I made arrangements for his case worker to attend the meeting. No one seemed to have a problem with this until I received a negative letter from the nephrologist stating I was "unwilling to attend" the meeting. This is untrue, if they had consulted me I could have told them what time I could have been there. The case worker said they had an agenda all worked out and presented it...basically how and why they will terminate our man's care if XY&Z does not happen. The case worker said it was not a two way street of problem solving at the meeting. Now the case worker has said the nephrologist refuses to dignify me with phone calls.
The good news is I have contacted the hospital our man was at when he started HD over 10 years ago. The PD nurse that does the training for PD care felt I should get the 2nd opinion from the nephrologist at their hospital. The nephrologist our man used to see retired, but this nurse remembers our man very well and was dismayed how we are being treated at the current hospital. She does not see why our man would not be a good candidate. She said his cat would most likely have to refrain from sleeping with him at night. I told her his current choices are death, massive sedatives,(no he is not in pain and only receives the Oxycontin on dialysis days), or going away to live in a phyc hospital far away from us his family, church, friends and community. She said if the PD did not work out for him he could always go back to HD. She even remembered when he had a temporary nephrostomy tube and a cathater in his neck for HD. He never had any issues with those tubes.

[Beth Witten MSW ACSW]

I am so glad to hear this. It definitely sounds like a positive option. I'd suggest that you discuss first thing with the the nephrologist who is now the physician at the old clinic and the rest of the treatment team how committed you are to being a good guardian for your man and how you'd like to work with them to provide him the best care possible. You should let them know what his schedule is so there are no misunderstandings about when he can be at the clinic for training and/or clinic visits.

It still bothers me that your man is receiving the kind of treatment you say his doctor and clinic are providing. If he is able to transfer to the other clinic, I might contact the Medicare survey agency who monitors care in dialysis so they can review his records and the records of other patients treated at the clinic where he is currently receiving treatment. You can find this under Find Helpful Phone Numbers in the Medicare website (www.medicare.gov). The state medical association should also hear about the care his nephrologist has provided (use of OxyContin for sedation not pain) and unwillingness to speak with you, the guardian. You should be able to find this phone number in your phone book. I'm not suggesting this to be vindictive, but because if the doctor and clinic staff are acting this way with you, it's very possible that other patients at that clinic are receiving similar care.

Good luck and please keep us informed.

[Anonymous]

I will report Tuesday after the visit with the nephrologist at the old clinic. You have no idea how we are hoping beyond hope that she will say he can have the PD!!
The neurologist perscibed the Oyxcontin for a sedative..ontop of the other sedatives...because he knows the gravity of the situation of the hospital refusing treatment to our man. I know the neurologist does not like all these drugs but he is trying to help and has been very supportive. I would not want to cause him trouble. He has been a champion for our man. If our man can have the PD we can stop the heavy duty sedatives. He is also on Medicaid, would I still make a report to Medicare?
Thank you for your support.
Cthreehorses

[Beth Witten MSW ACSW]

The surveyors that survey dialysis clinics do their surveys for CMS which is the Center for Medicare and Medicaid Services.

I am at the National Kidney Foundation's annual meeting. This morning there was a session on Dialysis Patient and Provider Conflict and new tools that (hopefully) will help resolve problems like yours. I talked with one of the Network Patient Services Coordinators who spoke on a panel at that meeting. He suggested that you also speak with the medical director of the dialysis clinic, if this person is not your man's nephrologist. If your man is being treated at a clinic that is owned by a dialysis corporation, he suggested that you talk with that corporation's risk management department. The medical director and the risk management experts should all understand the requirement for staff to communicate with the legal guardian.

I certainly hope that your meeting with the other clinic is successful and that your man is able to do PD. I suspect if he isn't having outbursts at home that doing home dialysis will be more "natural" for him and give him improved quality of life. By the way, you might ask the PD nurse what the concern is with the cat sleeping with the patient. I've heard this concern before and am interested to know whether it's to reduce the risk of infection or concern about the cat biting the tubing.

[Anonymous]

Thank you. I do belive the cat issue was due to infection..but I will ask. Today has been another fiaco here is the letter I wrote the case worker:

OK Bob is home undialisized. He was on 10 minutes actually. The hospital gave him 2 more ML's of Haldol. The hospital said they did not think I medicated him today even though the aide told them I did. He has never had this amount of drugs in his system ever and he is out like a light again. They said they put him on at 11:00...I talked to the pharmacist he said the hospital is not allowing the the drugs enough time to work. I am sedating him for a NOON hook up not 11:00AM. I wish they could let me know which it will be...11:00 or noon!
The neurologist is out until Monday. The pharmacist said to monitor Bob with this large amount of drugs in him. The pharmacist could not understand why after they gave the 2ml's of ADDITIONAL HALDOL and knocked him out why they did not dialysise him. The pharmacist said this is less than ideal. So my husband will retake Bob to the hospital after work tonight. This is insanity! Why would the hospital disbelieve I gave the sedatives and not even call me to double check? I just do not understand any of this!

Cthreehorses