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! :oops:
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)
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:
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.
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.
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 (www.fda.gov/cder/drug/infopage/oxycontin/oxycontin-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.
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.
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.
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.
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.
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!
Just to clarify my above post. It has been determined policy that if our man does not get HD we are to take him to the hospital’s ER when my husband returns from work the same day. I do not know what they will do in the ER, but we were told to do this in writing by the agency and if we failed to do this we will be cited on neglect charges. Right now I am so upset I am just shaking.
Have you contacted Adult Protective Services in your state? Have you contacted the judge who signed the order granting you and your husband guardianship? Have you written your recent concerns to the hospital administration. I’d suggest that you get something in writing from the pharmacist that indicates how long it takes his anti-anxiety / sedative medications to work.
In answer to your statement that you don’t know what will happen when your husband takes him to the hospital, when someone goes to the ER needing dialysis, he/she is usually dialyzed there with one nurse to one patient. I’ll be interested to know whether this is the case at his hospital.
I was just thinking…You said that his outbursts are cyclical. Has anyone looked at this dialysis records to see what staff member was working with him on the days that he had his outbursts? If it 's one or two staff members, perhaps he has a personality conflict with the staff member(s). If it’s with multiple staff members, it probably is something else.
Same staff at the dialysis unit. I doubt there is a problem there, except they seem to play into his behavior and that can be a reason his behavior escalates. What I think is happening now is that Bob is learning any non compliance from him he has learned he can come straight home and that is what he wants. He does not understand the ramafacations of his actions. He has learned it is easy to be sent home.
My husband sat with Bob in the ER 3 hours before they received a room.
Within the next hour blood work was drawn and read, but my husband sustained a couple good bites from Bob as they tried to draw blood. His labs were excellent the Dr. said. Better that on the 4/22 in the dialysis unit he remarked. My husband said he needed diaysis…the Dr. said they could not do that anyway in the ER they were not equipped.
So they came home.
No I have not contacted the agency you recommended. It is possible someone from the agency Bob receives services from did. Who has been contacted is the Commission On Quality Care out of Albany. They have mandated that we take him to the hospital ER if he did not get dialysis. If we did not take him, and last night was the first time since the mandate…we will be charged with neglect. I understood through verbal conversations with the case worker that the ER would have to dialysize him. Obviously that is untrue…they can’t. I do not know what Monday will bring. Something about the drugs and time effect will be good from the pharmacist. The case worker is also going to talk to the hospital about this deviation from Bob’s scheduled time of treatment.
The hospital is aware that the neurologist suggested Bob be dialysized with wrist and ankle restraints but the hospital considers that to be extreme measure and wrote they will not do that and prefer to transfer him out. Over the years Bob has been taken to the hospital neumerous times via ambulance to be calmed down from outburts. The always restrained his arms and legs. That would actually calm him down. Although Bob is only 90 lbs. it can take up to 4 men to handle him. It happens much less now that we have our own script for Haldol and can give the shot ourselves, so those types of ER visits via ambulance are much less. He does outburst with us but not that often, we know…esp. my husband knows how to talk with him. It can be over anything icluding going to a zoo…not wanting to get out of the car. Not leaving a restaraunt , walking out of church service, in the grocery store.
He does seem to go through a few weeks of not having them to having a few weeks of frequent difficult behavior. He had this behavior before he came to us at 11 yrs. of age 21 and a half yrs. ago. He even as a child bit a chunk out of his mothers foot when he did not want to go to school.
PS:I did try to contact the judge that did the guardianship his office also gave me the Mental Health Legal Services who gave us the contact of Commission On Quality Care out of Albany. All that came out of CQC is that we must take Bob to the ER if he did not get dialysis or we will have neglect charges filed against us. Somehow this just does not make sense to me…the hospital has no repremand from anyone for not dialysizing Bob. It just falls back on us.
We just came back from the 2nd opinion nephrologist for the PD. She is willing to give it a try if the vascular surgeon thinks he can do it. Bob being a dwarf has a small belly and that is her reservation…she said it is up to the vascular surgeon. She does think that 1 liter of fluid should fit in his belly. She mentioned something called the cycler I have seen on here. Also she said they just contracted for home hemo dialysis & that would be available in about 1 year.
That is great news! There is a presternal (or chest wall or bathtub) catheter for peritoneal dialysis that can be placed higher in the chest rather than in the abdomen where most PD catheters are placed. This type of catheter can be used with infants to adults. The advantage of this catheter is that small individuals and even those who previously may not have been considered PD candidates because of ostomies or heavy abdomens and skin rolls can use this kind of catheter. Patients with these types of catheters may be able to take tub baths whereas patients with abdominal PD catheters cannot and the waist of pants or belt won’t rub on and irritate it.
Dr. Twardowski from the Division of Nephrology, Department of Medicine, University of Missouri, Columbia, MO. has used this type of catheter very successfully since 1991. Here’s an article he wrote that describes the catheter and even how to insert it. Surgeons may not be used to getting information like this from patients or their caregivers, but Dr. Twardowski is well known and highly respected in the renal community so hopefully the surgeon will consider revieweing this article.
Thank you so much! I had my husband print a copy of the article and I will take it next Wed. to the appointment with the vascular surgeon.
We went to the surgeon today. The surgery is set for May 31st to insert the access. The surgeon said it would be a long process time wise to do the higher access that you sent me. He said he would need to study the info. and the hospital would need to aprove etc., etc. The surgeon gives the PD a 60-70% chance of working in Bob because of an old scar from toddler- hood on his right side.
I’m glad that the surgeon was open to reviewing the information. I certainly hope that PD works for Bob. Please keep us informed.
Today Bob had his surgery. He was very enthusiastic about the whole process including the Dr. visits and testing before hand. He seems to understand and is really positive about this. I am so proud of him. I spoke with the PD dept. today and as they said before if someone has dedicated help they need not be “self-care” as a requirment for PD. The current dialysis hospital social worker told Bob’s case worker that self care was a “requirement” for PD and they felt Bob’s hygiene would not make him a canadate for self care. Anyway everything went well today and the surgeon did not notice scar tissue in the abdomen. We are optomistic that this will be a positive development in Bob’s care.
I will be writing the current dialysis hospital a letter explaining that we went for a second opinion and decided to opt for trying the PD and Bob was very excited about this possible option and he just had the cathater put in. Thank you for all your helpful input and support. Also the surgeon told me he read the information on the cathater that you gave me and he said he did not want to “experiment” with Bob, but he does have and has read that information.