DialysisEthics2_Forum
Other => Historical Posts => Topic started by: admin on September 18, 2009, 09:44:27 PM
-
Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Fri Mar 21, 2003 3:37 am Post subject: Center Visit
--------------------------------------------------------------------------------
Yesterday during a routine medical exam my father was having I went to the dialysis waiting room to wait. One of the family members asked if I was new. I explained my father did slow nocturnal and I was just waiting for him to have an exam. These patients had at least heard of more dialysis being better and started to question me. As they told their stories this is what I learned both had husbands in their 30's. Both wanted them to be around along time and both were VERY concerned that their husbands felt so crappy and weren't eating well. One had to travel 1 hr to the center and the other had to travel 2 hrs and all the dialysis facilities close to them were full. Neither of them had any idea a slow nocturnal program was available to them 3 hrs. away for 1 --4 hrs for the other. But they both knew a trip once a month after training and doing it at night was an opportunity for them to get their lives back and help their husbands. Both found themselves quitting their jobs to transport their husbands as they were never sure how they would feel after dialysis and didn't want them to make the long drives alone. I gave them all the information I had and the telephone no. of who to reach to get into the slow nocturnal program.<
><
>As I was leaving they thanked me for all the information and left me with a disturbing question on my mind. Their question was....Why didn't anyone tell us?????? I really can't understand why staff and nephrologist don't tell patients where different programs are if they know not only can it improve the quality of life for the patient but make things much easier on the patient as far as travel and being able to keep their jobs.<
><
>I know for a fact the staff and nephrologist at this center knew about the slow nocturnal program.<
><
>This also gave rise for me to ponder another question. If the lack of energy their husbands had would give me the impression they wouldn't be interested in home dialysis. And maybe we are missing the boat in knowing how many patients would want home hemo or slow nocturnal as both of these wives were more than delighted to know their was an opportunity and knew their husbands would be too. Neither family was content with being tied down to the dialysis in-center schedule and the results and both wives were more than willing to be a partner or even run the treatments.<
><
>If any "staffer" out there can answer the question......Why didn't anyone tell us??????? I sure would like to know the reasoning behind it. It can't be greed when there is a waiting list of patients to get into the center. <
><
>How can anyone believe that a patient/family who could do home dialysis should be content with going in-center when the drive is an hr. or more. I hope I haven't opened up a can of worms. <
><
><
>
*****************************************************************************
Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Fri Mar 21, 2003 5:41 am Post subject: It's not right
--------------------------------------------------------------------------------
Marty, where were their Nephrologists? I agree that the staff should be encouraging these young family men to choose what would clearly be the healthiest treatment option but certainly their Nephrologists should be talking to them about nocturnal.<
><
>Marty, remind me, when your dad switched to nocturnal did he have to change doctors?
*****************************************************************************
jfwag
Joined: 11 Jan 2003
Posts: 140
Posted: Fri Mar 21, 2003 5:52 am Post subject: Nocturnal
--------------------------------------------------------------------------------
#1. Marty, I think people do have to ask, unfortunatley. We had to ask, but we did because we had a computer and were hooked into DE and people like you and other sites. We found out about homehemo, but not through our center. But when we asked there was someone there at the next TX and the rest was history. Homehemo came about even though we thought the doctor would never approve because of Lois' other comorbid conditions.#2. Most of the staff looked at us crosseyed when we told them this is what we were doing. I think so many tech's, who patients converse with the most, are not informed themselves.#3. Sitting in the waiting room and telling family members, "yeah we are getting trained for home hemo" they were stunned. We had a transportaion problem although not mileage wise. We were located in a small urban area and there were wheelchair van opputunities. It was just a hassle. #4 You are not opening a can of worms. The units should just openly offer this. Literature, verbally etc...maybe even when they first enter a dialysis center. Staff should also be aware of all modalities.
*****************************************************************************
Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Fri Mar 21, 2003 6:11 am Post subject: Doctor Issue
--------------------------------------------------------------------------------
This is the way our program is set up regarding nephrologist. If you live a distance away from the slow nocturnal program you are required to keep your nephrologist and if he refuses (as ours did) you have to find a nephrologist in the area to take you as a patient. The reason behind this is because in case you need medical treatment in a hospital etc. or dialysis at home you need to have a nephrologist close enough to you to know you and be able to work with the other doctors on your behalf. The slow nocturnal center nephrologist sees us monthly also and makes the decisions regarding dialysis treatments. If you are a patient in the slow nocturnal area you change nephrologist and the slow nocturnal nephrologist becomes your doctor unless you just plain prefer to keep your own.
*****************************************************************************
Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Fri Mar 21, 2003 6:22 am Post subject: Nephrologist
--------------------------------------------------------------------------------
In the center I was at there are 2 nephrologist. 1 nephrologist is my dad's. They both know about the slow nocturnal program and where it is at. I don't have a clue as to why they aren't telling patients about the slow nocturnal unless they fear of being accused of patient dumping or something. I know alot of the dialysis staff knows about the program also as I often get questioned by them when I go and visit the center which is less than once a year. Probably after this last visit they are going to hope I don't stop by at all, I'm quite sure these 2 families are going to start probing further.
*****************************************************************************
Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Fri Mar 21, 2003 11:07 am Post subject: Home hemo availability
--------------------------------------------------------------------------------
Hi Marty, As you know, the center I go to does not offer home hemo, but a sister unit does. When I first started dialysis however only an offer of pd and txp. was offered, there was no mention of home hemo!<
>Then for a very
ief time there were phamplets on the nurse's station and two posters, one in tx. area and the other in the waiting room. All have now disappeared! I asked and was told it's too hard in NJ to have a home hemo program because the state has very strict guidelines in regards to it.<
>The majority of staff that I've spoken to about home hemo has the attitude that pts. aren't really capable of caring for themselves, without help from them. They get miffed when I mention the fact that techs. only have about 6 wks. training in learning to care for many, and home hemo pts. the same in learning to care for just one pt., themselves!<
>I'm glad that you were able to be supportive to these two wives and their husbands; I'm glad you were as they say "in the right place, at the right time". Of course, you are always here giving encouragement too.<
>When I initially told a friend that I was opting for home hemo she asked many questions and I answered with much of the info. you had provided me. She is now entered into a pilot slow nocturnal program with the Rogosin institute in NYC, and the thanks goes to you! Lin.
*****************************************************************************
Marty
/>
Joined: 28 Oct 2002
Posts: 160
Posted: Fri Mar 21, 2003 11:34 am Post subject: Slow Nocturnal
--------------------------------------------------------------------------------
Lin, Glad to hear your friend entered into the pilot program and it's also nice to know you have been able to aid in helping someone. Boy, I gotta to tell you, it really is bothersome to me that families such as the ones I spoke too have had a majority of their life torn apart do to the travel time and having to quit their jobs on top of their husbands despression and losses and no one is saying their is another way. Don't misunderstand me, I always put my dad's health first but the anger I felt at loosing my business because of the dialysis transportation issue and not having the option of home hemo until I searched for a year still leaves a bitter taste in my mouth. Don't they know patients and families would like to stay intact as much as possible. Or don't they care. I can appreciate that the home hemo laws in NJ are strict and programs are difficult to run....but my God when do we stop looking at our problems and look toward giving patient opportunities. Rather than fight the NJ laws it is just easier to take the easy way out and not offer the program. This isn't right and never will be. We need better men and women working in dialysis if the ones doing it now can't fight for anything to help the patients. You can bet your bottom dollar if a nephrologist or nurse ever needed dialysis they would be doing it at home even if it met creating a program for them that only had 1 person.
*****************************************************************************
Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Sat Mar 22, 2003 1:25 pm Post subject: Attitudes!
--------------------------------------------------------------------------------
must change, that's for sure! I get far too many say to me that dialysis is best left in the hands of the "professionals". Now, I'm not tech, but know that they have minimal training, and also know I'm more than capable of doing every bit as good after that training. I also know that in the state I live in when someone goes to nursing school they have NO dialysis training whatsoever; training is received on the job when they decide to work in a dialysis unit. <
>I don't see much hope for home hemo in the unit I'm at; my hope is that the one opening next year sometime (same distance) will offer home hemo. I'm trying to find out exactly who will be running the unit in hopes I can contact that person/company and voice my support for starting a program. All I know now is that it's not FMC. They may be a big co. but if someone else comes along and fills the need for home hemo pts.. they will be left out in the cold. It's alright to SAY you offer home hemo, but unless you recruit pts. that are suitable, or don't do things to keep people from signing on (charging them exhorbitant fees over and above what is already paid by ins..) then you aren't really offering home hemol; it's just a line of crap to feed to the government and the network making it look like you're doing it by the book. Lin.
*****************************************************************************
Marty
Joined: 28 Oct 2002
Posts: 160
Posted: Sat Mar 22, 2003 5:01 pm Post subject: Professionals
--------------------------------------------------------------------------------
Lin, My reply would be dialysis is left in the hands of the professionals. The nephrologist still gives the orders.
*****************************************************************************
Pollyanna
Joined: 18 Mar 2003
Posts: 22
Posted: Sun Mar 23, 2003 8:21 am Post subject: Marty, Lin,
--------------------------------------------------------------------------------
Some possible reasons patients are not told about home hemo/ slow nocturnal.<
><
>1. Nephrologists would not make as much money from a home hemo patient as they would an in-center patient.<
><
>2. There are a lot of patients out there who just don't want to deal with home hemo issues. We are a nation of people who want what they want now, not have to work for it. We would rather have the convience of walking in, getting hooked up and then going home.<
><
>3. Staff are not educated about home hemo and its benefits to patients.<
><
>4. Nephrologists are relunctant to offer home hemo because of less $$$$$$$.<
><
>5. Nephrologists are not into starting new alternatives due to cost of initial set up. <
><
>6. Everything out there is greared to in-center hemo for convience and making a profit. <
><
>7. Even though the Nephrologists/ companies are by law to fully inform patients of all dialysis options, they will only do so in informing the patients of what their company/ nephrologist, has to offer. So if no home hemo, you only get told of the in-center option. <
><
> This is where patients and their families really need to do their own homework and not rely on the neph to do what is right for the pateint. Those days of Dr's being reguarded as some sort of "higher" person are long gone. It's about profit, not what is in your best interest to live a long and healthly life. <
><
>Personally I feel that if the Nephrologists were not immune to the Stark and anti-kickback laws, we would see a wide variety in home hemo offerings. But until it can be proven 100000000000% to the US government that home hemo is not only cheaper, but also allows patients to once again become productive, tax paying members of our society, it will not happen. That is why sites like DE and people like you, Marty, are badly needed out there, to help spread the word. The more demand there is, the more likely it will become available.
*****************************************************************************