Quality of Life

[Gerald Lively]

"Have you visited many hemodialysis units in the U.S.?"  Peckam

Sitting in a chair, virtually strapped in for four hours, unable to get the attention of anyone except a "tech", discussing your medical problems with a doctor  when he/she comes around once a week where anyone can listen in, time getting there and back, surly nurses, etc.  It's all in the record of my ongoing posts.

Now that I am free of dialysis, I owe someone something.  Although I have finished chemotherapy, I am about to enter the radiation phase - about four or five weeks.  My wish is not to walk away from what I understand as exploitive profit-oriented dialysis centers and do something for the patients beyond the dialysis center I was at.

It took me only one minute to find a photograph on the internet of dialysis in a better enviroment than I was in.  I took Peckham's  comment as a challenge of credentials, the first step towards a non-productive agrument.  I am not a social worker.  I am the guy who gets it done, which is what I did for a loving. 

[MooseMom]

OK, Gerald, thanks for the explanation.  My apologies; it's late and I'm distracted.  Again, thanks.

[Bill Peckham]

"Have you visited many hemodialysis units in the U.S.?"  Peckam

Sitting in a chair, virtually strapped in for four hours, unable to get the attention of anyone except a "tech", discussing your medical problems with a doctor  when he/she comes around once a week where anyone can listen in, time getting there and back, surly nurses, etc.  It's all in the record of my ongoing posts.

Now that I am free of dialysis, I owe someone something.  Although I have finished chemotherapy, I am about to enter the radiation phase - about four or five weeks.  My wish is not to walk away from what I understand as exploitive profit-oriented dialysis centers and do something for the patients beyond the dialysis center I was at.

It took me only one minute to find a photograph on the internet of dialysis in a better enviroment than I was in.  I took Peckham's  comment as a challenge of credentials, the first step towards a non-productive agrument.  I am not a social worker.  I am the guy who gets it done, which is what I did for a loving.

I think you are thinking of Zach and I would say that his was a fair question. Less a challenge to your standing than a reminder that you have very limited, an n=1, experience.

[amanda100wilson]

My neph.has never really asked about my Q of L.  I don't feel the social fa tors fit into the equation. In my discussion with my doctor regarding getting to do extended AKA nocturnal dialysis, I mentioned  how difficult it is to fit life around SDHD and how I would maybe like to get a job (Yes, SDHD has made me feel well enough that I think that I could get a job) but the talk quickly turned away to how I feel well physically, how good my lab. Work is, the expense of more dialysis.  I would have thought that this was an important point in the decision-making process.

[MooseMom]

Wait a minute, Amanda....are you saying that when you approached your neph about nocturnal home hemo, your neph steered clear of that conversation, saying essentially that 1, it would be more expensive and 2, why change what's not broken?  Do I have that right?

[amanda100wilson]

Yes, although he did agree to consult some nephs. Who have experience of nocturnal and I steered him towards Dr Bob Lockridge in the hope that hewouldn'tgo and consult some clueless dweeb about it.  I will keep you posted.  I'm seeing him mid May, so I'll kep you posted.  I am pretty determined to get what I want, and O have another neph. 'up my sleeve' in case I need to dispense with his services.

[paris]

Whatever works for one person is good for that person.  There is hundreds of years of experience on this forum.  It is interesting that one feels they know all there is to know.  It just can't be possible.  There are good dialysis centers,  apparently Gerald Lively has only been to a bad one. That doesn't mean others are "not seeing the light"; they are also intelligent, educated patients  that see a bigger picture.   One of my infusions took place in a space like a storage closet in a hospital with no call buttons, no tv, nothing.  But that doesn't cloud my judgement because I have been to three others that were wonderful.   Different exeriences.   

Don't think any one is changing any one else's mind around here.   lol   

[justme15]

The question that begs to be answered is, why are most dialysis centers more like a large garage than the more positive atmosphere of most Infusion Centers?

Maybe I'm not following something, but isn't Gerald just trying to advocate for better dialysis centers?  My mom had to utilize several different ones, an most of them were pretty dreary places with disgruntled employees.  Not all, but most of them.

[Gerald Lively]

Yes, I was advocating improved conditions in dialysis centers.  Infusion centers were an obvious comparison.  It doesn't matter any more, I have decided not to advocate for dialysis R & D nor will I form an advocacy group here and on the Chico State campus to push our retiring Congressman for one last grant.  I had forgotten how a constituency can complain about help on their behalf and I am much too old for this crap.  I have a great record of community organization through the Community Action Agency here, where I was once the Executive Director. 

No more of this. I retired from all this once.  Find someone else.

Gerald

[cassandra]

Aw GL nobody is complaining about help on our behalf. But the whole discussion just shows that its not as simple as changing surroundings in Dcenters, neither is increasing time on D so we can feel better for a whole of 2 hours a week. But I'm sure there is room for improvement on the decor, and instrument, and staffing front in quite a few D centers.

love Cas

[paris]

I thought people were expressing their own opinions and experiences.  I apologize if you took any of my posts as anything other than my own thoughts.   That is the best part of a group; being able to discuss, disagree and come together.    There are many here that are huge advocates for any and all things kidney related.

I agree with cassandra -- very well said.     

Stay and enjoy good discussions.  Explain to us how you are advocating for improved conditions so we know more of where you are coming from.   

And, now, back to "Quality of Life"............................   

[Gerald Lively]

I can see that I don't belong here.

[Bill Peckham]

This talk of infusion centers (or confusion center, as my brothers and I called it when my mom was going) has been helpful. Maybe dialysis should be more like an infusion center. They didn't ask about my Mom's quality of life, or her level of habilitation or rehabilitation needs. They gave her the antibiotics and she left.

Usually dialysis is compared to skilled nursing facilities. Because the payer mix is similar (constrained by a primary government payer) and both groups are seen as old and sick, requiring expensive care 'til their death. I think when people like Allan Nissenson talk about quality of life they mean it in a nursing home sense. They imagine that DaVita should be as responsible and thus involved in your quality of life as a nursing home is responsible and involved in their charge's quality of life.

MM why should dialysis providers be held accountable for dialyzor's quality of life? Is it in our best interests for them to be held accountable? Wouldn't it be better to hold them accountable in the same way an infusion center is held accountable? An infusion center needs to get the job done well without over burdening those who need their services. Their job is to minimize the hardship their service inherently entails. To minimize the treatment burden.

[MooseMom]

I can see that I don't belong here.

Yes, you do.  You know you do.

CKD/ESRD/dialysis is such a varied experience.  Hell, life is such a varied experience.  As such, it is really hard to determine what is needed, who needs and who even wants it.  For patient A, being able to do more dialysis at home greatly improves QOL, but for patient B, the idea of polluting his home with the detritus of treatments and sitting in a chair for longer is hell on earth.

The key is more "patient centered" care where it is the patient who dictates as much as possible.  But that would probably cost too much money. 

[MooseMom]

MM why should dialysis providers be held accountable for dialyzor's quality of life? Is it in our best interests for them to be help accountable? Wouldn't it be better to hold them accountable in the same way an infusion center is held accountable? An infusion center needs to get the job done well without over burdening those who need their services. Their job is to minimize the hardship their service inherently entails. To minimize the treatment burden.

I don't think that dialysis providers should be held accountable for a dialyzor's quality of life, but I don't think that the way that treatment is provided should detract from it, either.  Having untrained staff who can't cannulate a banana would detract from one's quality of life.  Having untreated anemia would detract from one's quality of life. 

I don't know anything about infusion centers, but my gut tells me that what goes on in infusion centers is not quite as complicated as the process of dialysis.  I may be wrong, but I'm guessing that much more can go wrong during a dialysis treatment and that the results of such errors have a higher likelihood of resulting in hospitalization or death.

I agree that dialysis centers should minimize the treatment burden, but again, they shouldn't add to it by poor anti-infection practices or rapid filtration rates that literally break your heart and eventually kill you.  Minimize the treatment burden without minimizing the number of patients' days on earth.

[Bill Peckham]

MM why should dialysis providers be held accountable for dialyzor's quality of life? Is it in our best interests for them to be help accountable? Wouldn't it be better to hold them accountable in the same way an infusion center is held accountable? An infusion center needs to get the job done well without over burdening those who need their services. Their job is to minimize the hardship their service inherently entails. To minimize the treatment burden.

I don't think that dialysis providers should be held accountable for a dialyzor's quality of life, but I don't think that the way that treatment is provided should detract from it, either.  Having untrained staff who can't cannulate a banana would detract from one's quality of life.  Having untreated anemia would detract from one's quality of life. 

I don't know anything about infusion centers, but my gut tells me that what goes on in infusion centers is not quite as complicated as the process of dialysis.  I may be wrong, but I'm guessing that much more can go wrong during a dialysis treatment and that the results of such errors have a higher likelihood of resulting in hospitalization or death.

I agree that dialysis centers should minimize the treatment burden, but again, they shouldn't add to it by poor anti-infection practices or rapid filtration rates that literally break your heart and eventually kill you.  Minimize the treatment burden without minimizing the number of patients' days on earth.

I agree with all of that - but why measure it by quality of life? I think this thread illustrates that the term is a distraction that leads to misunderstandings and discussion of everything but the fact that people are not doing their job or doing it poorly or doing it inconsistently.


EDITED TO ADD: And distract from the fact that the design of the "system" causes the depletion of people's volition.

[MooseMom]

Does the depletion of a person's volition lead to a decline in the quality of that person's life?   

[Bill Peckham]

Does the depletion of a person's volition lead to a decline in the quality of that person's life?   

Directly. However, I see depletion as a way to understand the mechanics of the situation. I'm not suggesting we develop a depletion analog of the KDQOL and reimburse providers based on the score. That is being suggested for the KDQOL.

>>>>>>------<<<<<<

I am concerned that this quality of life talk - which is suspiciously coming from all corners though it has been building for many years - is part and parcel with the talk of accountable care organizations. That quality of life is a stalking horse for accountable care. The LDOs want to run accountable care organizations. They want to take responsibility for all your medical care but I think that is not in our interests for the same reasons it was not in our interests for the bundle's payment period to be for the month or the year. I have deep concerns. Add to that using quality of life as a measure and the idea of an ACO run by a dialysis company becomes repellent to me.

If we judge care based on people's quality of life then providers will feel they have a responsibility to improve it, they'd be able to say they're being paid to improve it. So they could look at themselves, look at the job they do and say wow I could improve my patient's quality of life by doing just a little better or they could look at their patients and tell them, in a very understanding voice, using little words clearly enunciated, how it is that the patient is just hurting themselves and suggest ways that the patient could do a better job of having a higher quality of life.

Which way do you suppose it will go? QOL has always bothered me but it has been this conversation that has crystallized why.

[MooseMom]

I think it would go the way of the crisply enunciated voice using little words, although slightly louder in volume.

You are right, though, in that the quality of life discussion is quite prevalent.  I thought it was just me.  You know how when you learn a new word, you start seeing it everywhere?  It's the same thing.  For me, a "good quality of life" is defined at the very least by absence of suffering.  Since IHD is a community of people who seem generally comfortable in discussing topics like this, I decided to ask how people here felt about the quality of their lives that are vastly intruded upon by dialysis.  I was just curious.  I like learning about the lives of others.  And the fact that this discussion has helped you to more clearly define your own concerns is a good thing.  Hopefully it has done the same for others who might read this thread.

[MooseMom]

Uh oh, Bill...I'm afraid I have more questions.

You speak about "burden" and minimizing the treatment burden.  I agree wholeheartedly, but I'd like to ask you how you would define "burden".  I am assuming that, as seen in your signature, you are doing NHHD?  That is an awfully long time to be stuck to a machine.  That seems awfully burdensome when you could just pop into a clinic only three times a week for half that time and have someone else do all the work for you.  I guess it begs the question of which is the greater burden, more hours spend on dialysis in a house filled with boxes and bumph in order to feel physically better OR the loss of entire days spent getting treatment in clinic and then recovering from it (but not having to spend so much time on the machine)?

When it comes to the way you receive YOUR dialysis (and this is not meant to be a question about general policy, rather, it is a direct question to you, personally), what do you see as the most burdensome aspect, and can you think of a way that would minimize that burden for you?

[Bill Peckham]

I want to maximize my BF time. I want to maximize my awake hours not dealing with dialysis and feeling as well as I can feel.

My dialysis takes about 4 to 7 hours of my awake time a week. After a cup of coffee I feel about as well as I am ever going to feel most days allowing for the aches and soreness that comes from a job on my feet and spring yard work.

I was asked by a doc, via email, what my Kt/V was and I replied that I didn't know and hadn't cared this century. The only number I need to know to know how I am doing is the hours worked in the week. This week I am +40 so I am doing great.

The things I didn't always account for incenter is the time recovering from dialysis, the burden of dietary and fluid restrictions that comes with conventional incenter dialysis and the cumulative effect of hospitalizations (and the benefit of avoiding them). I've never, in nearly 22 years had a hospitalization due to a dialysis treatment (or lack there of) - the only time I've dialyzed in the hospital since I started was when I had surgery to remove the kidney with the growth.

For me, the higher dose of dialysis, not being exposed to other people's infection vectors by dialyzing at home, alone and self care (leading to volition nourishment as opposed to depletion) is how I limit the treatment burden.

[MooseMom]

Bill, I nominate you to come up with some sort of algorhythm that accurately defines and measures "BF time" (BFt).  "BF time" and "Extra Cheese Dialysis" are the two new buzzphrases of the renal community.  LOL!

What does your doc have to say when you tell him you've not checked your Kt/V this century?  LOL!  I'd guess he's used to you by now. 

[amanda100wilson]

Lack of control, and the sheer exhaustion after a treatment session,  defines n-unit dialysis for me.  I was pretty upset when I was told that they wanted me to come in-unit prior to starting NxStage. Ultimately I'm glad that I did because now, whenever I get impatient with all that NxStage entails, I push on with the next treatment, knowing that as it goes (with the exception of NHHD) that it is preferable to in-unit. 

My dialysis unit, is nice, but clinical.  It is quite a small unit and new, and really not a bad environment.  Each chair has a tv, although I never used it, daytime TV leaves me bored.  I do not agree that nephrologists see their patients whilst they are in the chair, but I was given the option of seeing the nephrologist in a private consultation when I had finished the stint in the chair.  To me, seeing a patient whilst they are dialysing, where everyone can hear is a violation of privacy.

I guess that I keep coming back toots on this thread because QofL is so hard to define.  Maybe satisfaction with life would be a better measure, but even with healthy individuals, what gives satisfaction with life for one person, would not do so for another

Being in control is important to me, and I really can't stand being patronized to by medical or nursing personnel.  By keeping my interface with them to a minimum, ie by doing home dialysis, allows me to do that.

Now I just need to get my time back by doing nocturnal.  Relating back to what Bill said about work, I am just frustrated with how little time Ihave to get work done. From someone who previously did PD, the time given up for NxStage is still onerous.  I feel much better, but every day, with the exception of the days off, is defined by when  can fit dialysis in.  I am also frustrated that getting to do nocturnal isnot just a simple processor saying to the neph, that I want to do so.  If I had my choice, I would move to ones of those areas that have enlightened nephrologists, and who truly respect their patients intelligence and desire for self-determination of treatment modality, rather than have to work on ones who aren't.

[purgatory]

This has been a great discussion threat.  Gerald, please stay with us, I have always found your postings helpful.

Since I started PD in November 2010, quality of life has been my most important decisive factor to stay on dialysis.  Doing the dialysis at home is actually the easiest part of the process for me. I currently have no other health issues so I am lucky, I know.

My biggest issue is lack of control over my own life, even on home PD.  I personally find it very hard to be forced to have blood work done every 4 weeks, since I have severe needle phobia which seems to be getting worse with each new enforced blood draw. This is a treatment burden that is very hard to bear for me.  It isn't just the pain of the blood draw, it's the feeling of the needle going into my arm and the feeling of being at the mercy of the dialysis center.  I know regular blood work is necessary, but there should be a little leeway for individual patients - I feel like a square peg that is being hammered into a round hole without any consideration for my person.  Needless to say, how I feel does not matter to my dialysis center - it's the CMS regulations and the pay that matter. As a person, I feel that I am slowly disappearing, until only the patient is left.

I'ts the ongoing feeling of being powerless over my own life and body that is is gradually diminishing me.  Still, I was hanging in there and actually doing fairly well until Baxter decided to recall their current cycler, which happens to work perfectly for me, and replace it with an upgrade that will no longer allow me to run my therapy (you now have to start on a drain, even if you hook up dry).   I have tried the new cycler, and it does not work for mel

If you don't even have control over keeping the most basic piece of your dialysis treatment, a cycler that works for you, what have you got left?  If you are no longer allowed to dialyze in a way that meets your needs, where do you go from there?  After 15 years of CKD, I need a predictable means of treatment, not one that can be taken away from me without recourse.

I feel that I am caught in a web of government regulations and corporate interests that leaves me no room to resolve my problems successfully.  I am depleted - emotionally, my quality of life is gone.  I'm thinking of giving up.  At least there will be peace at the end of that road.

[MooseMom]

Purgatory, I got all anxious and unhappy reading your post; I can't imagine having to learn a new machine that doesn't even work better for you, anyway.  That must be incredibly frustrating.  The notion that third parties have more control over your treatment than you do...well, "frustrating" is too meek a word.  For how long have you been having to use the new cycler?  I seem to remember seeing some posts here on IHD about it, but I don't know what the general consensus is. 

I'm not advocating anarchy, but what would happen if you missed the occasional blood draw?  I'm assuming that the center wouldn't get paid?

I wonder why someone doesn't make an easy to use meter like the ones diabetics use for their blood draws.  I guess they don't extract enough blood for them to do all of their tests.  Still, it would be a good idea.

Do you have any ideas about how you might grab more control over your own life?  Is there a different cycler you could use that might be better?  I'm sorry...I don't know anything about PD machines.