Barriers to home dialysis

[okarol]

I think that Epoman was a smart dude, Karol!  But...maybe instead of calling it the "News Article Section," he should have named it "Karol's stuff."     That's the first place I go when I log on to this site, Karol!  Without you, I'd be uninformed and in the dark.  Thanks for all you do!

Thanks petey! 

[Zach]

That's okay Zach  You can do no wrong in my book!

 

[del]

Here in Newfoundland most of the home hemo dialysis patients live in rural areas. There are only 6 or 7 centers in all of Newfoundland which means a lot of people have long drives for treatments unless they move from there community. Newfoundland does not look like a very big province but it is an odd shape.  From St. John's (the capitol city )to St. Anthony is about a 10 hour drive.   Travel was the main reason for us wanting home hemo. The weather is so uncertain here that you could leave home in the morning with it being a nice day and by the time you had to come home could be the middle of a snow storm n the winter. If we had not gottten it we would have moved to the town where the center was by now.  We were lucky only having to drive for an hour, a lot of people had a 3 hr drive to get to the center but after 6 years of driving every second day it was getting to be a pain.  In Newfoundland home hemo is really catching on.   Like people here have said it has to be a special group of people for home hemo.  You have to be diligent about your treatments. Hubby had the insomnia at the beginning and considered giving it up and going back to in center at the beginning. He kept at it and finally after about 6 months he relaxed enugh that he was able to sleep. Now after a year and a half he does not even consider going back to in center.  It is stressful sometimes especially when there is machine problems but we have techs(the people who fix the machines) on call 24/7.

 We have had to call several times and they have always solved the problem for us.  I know some people on forums have said that they couldn't do home hemo because they lived in an apartment and the landlord would not allow them to have it. We do not have nxstage in Canada so you have to make the plumbing and electrical changes.  I only know of one prson in Newfoundland who does dalysis without a partner and his sister lives with him.  All the others I know have a partner who is there for every treatment.  I won't even leave the house while hubby is hooked to the machine.

In Canada everything is paid for by MCP so it is no cost to the patient.  The cost of plumbing and electrical changes you have to make is tax deductable as well.

[Bill Peckham]

Have you all see the article by Mel Hodges? It is in the most recent issue of Hemodialysis International.
The actual article is here:http://www.blackwell-synergy.com/doi/full/10.1111/j.1542-4758.2008.00232.x
And here are two blog posts by me on the topic: http://www.billpeckham.com/from_the_sharp_end_of_the/2008/02/live-longer-and.html
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/02/getting-buy-in.html
And here is a link to the HDC thread http://forums.homedialysis.org/showthread.php?t=1743

One obvious barrier to home hemodialysis - specifically more frequent home hemo is Medicare reimbursement for the training. Right now there is a small differential - $20 - for every training session but the payments is still limited to three times a week. If one is training to go home on the NxStage for example, you train five days in a week; two of the training session are not reimbursed at all. This increases the startup costs of a program and it makes it harder for providers to let dialyzors try home hemo. Most providers reckon they need someone to stay on for a year to recoup training costs, particularly when considering the current high NxStage washout rate.

Reimbursing for each training session would cost around 2 million a year (7 extra payments for around 2,000 people) but would do incalculable good. It's the best value available to Medicare.

[plugger]

I think I have enough to make suggestions to my state rep about what could be done to help overcome the things that are preventing people from choosing home dialysis.

*Require DVDs on home dialysis be given to patients starting dialysis – I recall being given a packet of information when my daughter started dialysis, would have been nice to see more on home dialysis.  (I’m going to be getting a DVD from Home Dialysis Central for my friends and I to look at for starters)

*Lunches and conferences for nephrologists where the idea of home dialysis could be presented

*Road shows with doctors and nurses presenting the idea of home dialysis to patients and staff – maybe even finding a consultant like Dr. Christopher Blagg from Northwest Kidney Centers to help put something together

*Tradeshows with the different manufacturers of home dialysis equipment in areas that have been identified as having a strong demand for home dialysis

*State inspections would include making sure patients have been informed of the different modalities of dialysis

*The state board of health could look into including home dialysis in the nephrologists’ training and exams

*State might consider helping out with the training expenses for home dialysis

Comments are welcome.

[Sluff]

Sounds like a great list Plugger.

[plugger]

Thanks Sluff, I'm thinking of asking also for a requirement for regional home dialysis training centers after reading what is going on over at Home Dialysis Central - couldn't hurt to ask I suppose, but I'm still thinking about it.

[plugger]

I figured it was about time for an update on what could be done legislatively to help promote home dialysis here in Colorado.  I gave the list of suggestions to my state senator and last I heard he was looking it over and he did make the suggestion I might consider forming a non-profit to accomplish many of the objectives - I might have to think about that one.  It would be a really big step and I'm not sure I could pull it off.

I also gave the list to my state rep and he did ask if any other states have done something similar?  I don't have an answer for that one. 

I also just heard from my rep about some neighbors he ran into. One of them has a father who is on dialysis here in town and they are upset about the high tech turnover they are seeing and the fact the father came home one day with blood all over his clothes.  I did mention one thing I hope I would consider under such circumstances - home dialysis.  I used the search on the Home Dialysis Central website and found three places in Denver and Lakewood Colorado that offer both nocturnal and daily dialysis and sent off the info to my rep - this is a great feature!!
http://search.homedialysis.org/locate/search/

[Hemodoc]

I just read over the posts on this topic today and the home hemo option in America is the option that it is in most other developed nations.

I believe that there are several barriers to home hemo programs here in the US.

1) Medicare payment.  Home hemo is not part of the recipe to a large extent.  In many ways it is a funding issue that is the barrier to home hemo programs.

2) Physician awareness.  As a physician, as I have learned more of the home hemo option for myself, I have become increasingly more aware of the fact that many of my colleagues are not aware of this option.  In fact, most physicians experience with hemodialysis is limited to the sick and often unstable ICU patient needing dialysis who promptly crashes as soon as the machine is started.  For myself, it has taken me over a year to get over my fear of hemodialysis.  It is a safe procedure when done correctly and competently. 

3) Patient awareness.  Interestingly, many patients give up their autonomy with this disease much more so than with other types of illnesses.  Promoting patient involvement in their own disease process has been shown to improve outcomes and most especially with CKD-5.

4) Home machine options.  I have had much discussion with Bill Peckham recently on the choices before us.  Yesterday, while at my unit, I spoke for quite some time with my unit director on this issue as I will soon be the first patient on their soon to open home dialysis program.  I brought up the issue of the portable machines and how dialysate flow being one of the rate limiting factors for portable machines.  He countered with his experience with the old REDI machines that had a self cleansing apparatus for the dialysis so that you could use pond water and still do safe dialysis.  If a company was able to develop a portable machine with recirculated dialysate and up to F 200 kidneys, then we would be able to utilize the technology with a great economy of scale yet to be duplicated.  This would put the discussion on transplant vs dialysis costs back into the framework that it should be.  Thus, the patient would then have the choices before them to choose between two excellent modes of renal replacement therapies.

5) Lastly, even among patients on hemodialysis, one final barrier is the mistaken negative attitude towards dialysis in general.  I am so grateful my Lord and God has provided me with a means of living longer than I would have naturally been able to live because people like Dr. Scribner dedicated so much of their own time and talent so that I could continue to enjoy the life that God has given me.  It is time to be grateful and not hateful for such an amazing and wonderful technology.  Yes, there are difficulties, but, folks, you are all living on borrowed time.  I shall never be ungrateful for the time I now enjoy above and beyond my natural expectation.  Wow, what a blessing to be alive today to enjoy life without functioning kidneys. 

Yes, perhaps that is the greatest barrier because if even the patient on dialysis "hates" dialysis, what will all those crying over expensive technological health care expenditures believe.

Just my own opinion on the wonderful gift of life that dialysis continues to give me.

[stauffenberg]

In the history of most incurable diseases requiring onerous management there is a gradual evolution of patient attitudes from first being thankful for the treatment to eventually regarding the burden of the treatment and the disease itself as the same thing.  When I was a child with type 1 diabetes in the 1960s, I can remember how all the medical propaganda we were fed from morning to night was about how thankful we should be for the 'medical miracle' of insulin and how wonderful that made everything.  Now that patients have become more aware of how utterly inadequate any regimen of insulin therapy is for sustaining health, and how obtrusive and lethal intensive management of the disease can be, the chief website for type 1 diabetics is called "Society for an Insulin-Free World," because insulin therapy is now hated as the chief embodiment of the disease itself, rather than being regarded as a positive treatment.

The same evolution of attitudes can observed with respect to dialysis, depending on how the patient needs to understand the predicament of ESRD in order to be able to survive with it psychologically.  Some people recognize dialysis as the everyday embodiment of their disease and hate it, others persist in seeing it as benefiting them by keeping them from death.  But the fact that 20% of dialysis patients ultimately kill themselves by voluntarily withdrawing from dialysis shows that dialysis cannot siimply be regarded as a positive thing, since even death can be preferable to it.

[Hemodoc]

Dear Stauffenberg,

By your own admission, you have had nearly 50 years of life opportunities that would not have been without insulin.  I call that a modern medical miracle.

I am sorry that you feel that it was a burden to you, but for myself, let the burdens continue by the grace of God as long as He wills.

In kindness,

Peter

[del]

Hemodoc, Stauffenberg's opinion is not the opinion of everybody.  He is entitled to his opinion but that's all it is is an opinion..  I really don't care how many articles or books or statistics he quotes to back up his opinion.  My husband has been on dialysis for 11 years now.  he is thankful every single day for dialysis traetments. without them he would have died. He has lived so much more in the 11 years than he did in the years before he started dialysis when he was sick.  His life does not revolve around dialysis rather he fits dialysis into his life.  If it wasn't for dialysis he would have missed so much in life.  His days are so busy that by the time comes to hook up to the dialysis machine nighttime he is tired and sleeps right through his treatment.  He for one does not hate dialysis (sometimes he doesn't really want to hook up to the machine).  He realizes how sick he would be without it.  He was in center for almost 7 years. The people who gave up dialysis treatments were older people with a lot of other medical issues and dialysis just wasn't working for them.  They were really sick and miserable.  So take stauffenberg's posts for what they are just his opinion!!  I respect his opinion as I do everybodys but I don't have to agree with it.  What a terrible world if everybody was negative!!  Hubby's motto is make the best of what you have.

[monrein]

I am very grateful not to be additionally burdened by Stauffenberg's outlook.  My Mum died at 46 of malignant melanoma after a brief three month struggle and she would without question have chosen (as would all of her family have preferred) ESRD and the option of dialysis.  We do deal with a lot and all of us would prefer to be illness free but sitting around looking through a glass darkly just seems like a colossal waste of time, intelligence, spirit, energy, strength, opportunity and of course the totally frivolous potential for fun.  Not even those who have never been sick a day in their lives are happy and contented all the time and to natter on endlessly about the depth of gloom that we ought to be experiencing, based on the "literature" is in my opinion a downright silly approach.  The Buddhist notion of duka, that ordinary life is full of suffering and sorrow is quite freeing as it seeks to help people lose some of their unrealistic expectations about life but it certainly does not culminate in advocating  mass suicide as a way out.  On the contrary, it leads to the concept of individual enlightenment despite the inescapable challenges of the world. When one thinks about various forms of suffering and misfortune in the world, people living in constant physical fear, people starving, being tortured, dying of AIDS without access to medicines, abused or exploited children, the degree of poverty in so many places, I find it quite easy actually to be grateful for my personal "burdens".  To carry on incessantly about how victimized we are by the healthy majority, maltreated by the medical community, cajoled and condescended to by the journalistic community seems crazily self-indulgent, isolating and quite futile.  Advocacy for better medical treatment is one thing, and a crucial thing at that, but apparently advocating depressive navel-gazing, panic attacks or ultimately suicide as the only sane responses to CKD seems beyond extreme.  To focus always on the 20% who may choose death over dialysis is to marginalize the larger 80% who don't do so and to minimize the creative and adaptive ways they have found of coping and of carrying on lives of meaning.

Del, your husband has it right in my opinion and his attitude mirrors my own.  We all must make the most of our lives and that includes finding ways to live with our limitations.  People who withdraw from dialysis, it seems to me are NOT saying they prefer death to dialysis.  More likely dialysis (a mere treatment tool) is simply not working well enough to return sufficient quality of life to them.  Some perfectly healthy people also decide for a variety of reasons that life isn't worth living.

Life is imperfect, live with it.  Or, as a good friend of mine at the gym tells me all the time if I want to quit my routine early or if I'm complaining..."Just suck it up".  And I do.  Makes me feel quite normal.

[stauffenberg]

When you give people the alternative between death and accepting anything else, the fact that they generally choose the alternative can hardly be cited as evidence for how positive that alternative is!  So the fact that 80% of patients continue to find dialysis preferable to suicide hardly means that dialysis is something to be grateful for, but instead just shows how difficult it is -- because of blind, irrational, instinctive forces compelling us to keep living however hideous our lives may be -- deliberately to choose death as an escape.

The Ancient Stoics had a theory that no experience had to produce suffering, since all our suffering consisted only in our negative response to experience, which was always in principle under our control.  But at a certain point you have to become so divorced from reality as to be positively psychotic not to register in your feelings and perceptions the negativity coming at you from the objective reality around you.

Zen Buddhist monks in Japan sometimes commit suicide by eating a diet of pine needles and drinking tannic acid tea and then starving themselves to death, becoming a living mummy sealed in a stone tomb.  If they manage to preserve their corpse this way, this is regarded as the greatest achievement of Nirvana.  So I would hardly count Buddhists generally as opposed to suicide.

Christian mythology generally views the world as some sort of 'gift' from an invisible intellect in the sky, which in turn encourages an attitude of perpetual gratefulness for everything that happens, on the assumption that it must all be part of the plan of some infinite wisdom and goodness.  But this requires viewing many things which are obviously senseless and evil as somehow, by mysterious, hidden purposes which no one can discern, the products of intelligence and goodness, and as things to be grateful for rather than hated.  No wonder dialysis seen from that perspective has to seem just too wonderful for words! But that is a piece of intellectual acrobatics I am not able to master.

[Zach]

When you give people the alternative between death and accepting anything else, the fact that they generally choose the alternative can hardly be cited as evidence for how positive that alternative is!  So the fact that 80% of patients continue to find dialysis preferable to suicide hardly means that dialysis is something to be grateful for, but instead just shows how difficult it is -- because of blind, irrational, instinctive forces compelling us to keep living however hideous our lives may be -- deliberately to choose death as an escape.

I guess, Bertolt Brecht was right:

Der Mensch ist gar nicht gut, d’rum hau ihn auf den Hut
hast du ihn auf den Hut gehaut, dann wird er vielleicht gut.
Denn für dieses Leben ist der Mensch nicht gut genug
darum hau ihn eben ruhig auf den Hut.

 

[stauffenberg]

Another line from Brecht's 'Dreigroschenoper' I remember from that song might also be appropriate to this discussion: "Der Mensch ist gar nicht gluecklich."

[del]

Stauffenberg, my husbands life, as well as a lot of other people's lives, is NOT hideous!!!  I really don't like you suggesting that it is.  If everybody had your opinion there would be very few people in this world!!!  The world seems to be a much better place when we focus on the good things instead of always trying to down everything!!  Maybe you should try looking on the positive side of life.  Just a suggestion.

[okarol]

Life on dialysis is difficult, and perhaps it is hideous for a few. But I think many, many patients are grateful for the dialysis. Life is worth living.

Not everyone is fortunate enough to get a transplant. Or wants one. 

[flip]

I think a drink or two of moonshine might help him.

[petey]

Stauffenberg, my husbands life, as well as a lot of other people's lives, is NOT hideous!!! I really don't like you suggesting that it is. If everybody had your opinion there would be very few people in this world!!! The world seems to be a much better place when we focus on the good things instead of always trying to down everything!! Maybe you should try looking on the positive side of life. Just a suggestion.

I totally agree with Del -- and second everything she said.  My husband's life is not hideous, either -- even after 13 years and 4 months of dialysis, transplantation, and now dialysis again.  Marvin and I have a busy, active, productive, fun, and happy life.  No, it's not easy to be a dialysis patient and a dialysis caregiver, and it's definitely not the "hand" we would have chosen.  It is, however, the "hand" we were dealt.  We're making the most of it.  To us, life is good -- very, very good.  Life (and dialysis) is what you make of it.  With all of its troubles, hardships, and struggles, dialysis is still something we are grateful for.  Without it, Marvin would have been dead over 13 years ago and I would have been widowed and alone at age 32, and any kind of "life" (however difficult, however plagued with illness, however unattractive to others -- even others with the same disease and same medical treatments) is better than that option.

[Hemodoc]

Returning to the topic of this thread,

One of the barriers to home dialysis is as demonstrated the negative attitude many on dialysis have towards dialysis.  It does readily appear that vocal dissent from the patients themselves even if only a few is what the nephrologists and politicians and ethicists seem to focus on most.  Yet, the many success stories of dialysis get shorter shrift and are not listened to. 

It is almost always easier to be a critic than a supporter.  It is almost always easier to publish a negative story than a positive story.

[stauffenberg]

As for life on dialysis being hideous, don't take my word for it, just look at the remarks of other patients taken from some of the news stories posted by Okarol yesterday.  Mrs. Flannery was quoted as saying that "You're not really living, just existing, until you can get a kidney," "it's not a great way to live." (From "A Bloody Long Wait")  Mr. McGhee said of his own experience with dialysis: "There were times when I couldn't get out of bed.  (From "She Gives a Kidney to a Friend") For years it felt like I had the flu for a year."  Now what's the appropriate word to describe such an existence?  'Hideous' comes to mind.

I believe that potential home dialysis patients should speak the truth about how they feel about being hooked up to a machine that invades their home and forces them 'to build their own scaffold' rather than allowing them to sit back, relax, and let a professional do the job. If their negative feelings discourage some dialysis providers from offering more home dialysis, then the supply will have simply matched the demand.
 

[Meinuk]

I believe that potential home dialysis patients should speak the truth about how they feel about being hooked up to a machine that invades their home and forces them 'to build their own scaffold' rather than allowing them to sit back, relax, and let a professional do the job. If their negative feelings discourage some dialysis providers from offering more home dialysis, then the supply will have simply matched the demand.
 

Comeon - are we back to beating this dead horse again??  I am on home dialysis and I am speaking my clear unadulterated truth.  I feel better, my life is minimally impacted (deliveries can still make me lose my temper) and I've returned to an almost pre-dialysis existence.  Stauffenberg, your views on home hemo are outdated.  You have been out of the game too long, and you seem to refuse to believe that people can actually survive and not want to die on dialysis.

People who are sick can often be depressed.  People who have been recently transplanted can also be suddenly euphoric in the change that has occurred in their body.  The press often only deals in headlines, extreme examples of good or bad - it is the nature of journalism.

Look for the middle ground, we are sick, but we are surviving by any means possible.  For me, and others that is home hemo.  It is a positive and beneficial therapy.  I am also on the UNOS list, and I have had newspaper articles done about my home hemo experience, and I'll have a reporter following my transplant as it happens.  I expect highs and lows, just don't take them out of context to advance your biased point.  I know that you are the voice for those who just can't handle home hemo, and for those who are suffering on dialysis - but you are no longer walking in their shoes.  Give them some credit that they can have good days too.

[petey]

Thank you, Meinuk, for saying what I was thinking.

Look for the middle ground, we are sick, but we are surviving by any means possible. For me, and others that is home hemo. It is a positive and beneficial therapy. I am also on the UNOS list, and I have had newspaper articles done about my home hemo experience, and I'll have a reporter following my transplant as it happens. I expect highs and lows, just don't take them out of context to advance your biased point. I know that you are the voice for those who just can't handle home hemo, and for those who are suffering on dialysis - but you are no longer walking in their shoes. Give them some credit that they can have good days too.

Home hemo is definitely "a positive and beneficial therapy" for Marvin.  And, to him, each day that he wakes up is a GOOD day.   Marvin loves life -- and he loves HIS life (home hemo and all).

[jbeany]

I guess, Bertolt Brecht was right:

Der Mensch ist gar nicht gut, d’rum hau ihn auf den Hut
hast du ihn auf den Hut gehaut, dann wird er vielleicht gut.
Denn für dieses Leben ist der Mensch nicht gut genug
darum hau ihn eben ruhig auf den Hut.

 

My high school German needs work -
Men are not good enough, so hit them in the head and they might become good enough for life.  
Am I close?

 

Another line from Brecht's 'Dreigroschenoper' I remember from that song might also be appropriate to this discussion: "Der Mensch ist gar nicht gluecklich."

Men are not happy.  - But that doesn't mean we don't strive to be so. . .

As for being able to "sit back, relax, and let a professional" handle my dialysis treatments - I'm able to relax at home, knowing I'm in charge.  I was never able to relax in center, constantly wondering when I was going to crash, and frustrated by the lack of control.

If more people want home dialysis, they are going to have to push for it themselves, like I did at my center.  Around here, most patients didn't know it was an option.  Once they found out about, we joined forces and pushed our center into offering it.  The supply still hasn't caught up with the demand - there are more patients who want it than can be trained at one time!