Live blogging the Comprehensive Course in Hemodialysis - morning session

By Bill Peckham

The program is just starting:

Session I
Christopher Blagg, MD and Leonor Ponferrada, BSN, RN, Presiding
8:00 - 9:50am

8:00 Leonor Ponferrada, BSN, RN is giving an overview of the program. It is meant to present information from successful programs

8:10 Introduction - Home Hemodialysis Today: Update Christopher Blagg, MD

Decline in PD is still occurring but has slowed. Home hemo is growing but from a very lo base, we're above 1% for the first time since 1998 (in '98 it was a percent of a smaller number). The greatest increase has been from short daily (basically the growth of NxStage), nocturnal has declined slightly. Washington and Indiana have the greatest percent on home hemo.

According to MedPAC 22% of all units offer home hemo (or say they offer) which would mean that about 4 patients per program. The suspicion is that some are  home programs in a name only. Legislative changes are coming - bundling, changes in Conditions for Coverage.

Davita has about 1.6% on HHD. FMC is also committing to HHD. Internationally PD dominates Australia has about 10% on HHD NZ about 16%. Interest in HHD is growing in Asia: China, Hong Kong, etc.

8:20 Rick Berkowitz Why I Chose Home HD

Rich is relating his experience transitioning to HD. Needed to start HD with a catheter incenter, was stuck there for three years. Found the incenter renal diet a burden while waiting for the unit to start their HHD program. Presents the symptoms of conventional incenter HD, including a heart attack on the way home from a conventional treatment.

Tried nocturnal incenter, found it too hard to sleep. Did not like the comfort of the unit or the staff. A change in insurance forced a change in provider. Nephrologist suggested to self advocate did so by writing everyone involved. Was finally granted chance to go home using the NxStage.

HHD and now doing extended overnight HHD has been a sea change - allowing him to have a normal day. The term ESRD starts people off on the wrong foot - first impressions matter. sommerville would object to his transplant take; need optimal for people who won't get a transplant.

Asks why there is a disconnect - the Patient, Provider, Physician or Payer. Surprise - it's all four. The demand for RCTs are a problem too.

8:45 Jim Manning Home Hemodialysis, My steps taken to become a Home Hemo Patient

Jim relates his transition to CKD5. Has cat named Peaches - his third love behind his wife at number one and his Doctor Bonnie Collins, second. His sister's passing focused his mind on his own health. Has a long family history of insulin dependent diabetes, he believes by listening to his docs he'll be able to outlive the experience of his siblings.

Was able to explore treatment possibilities through the Northwest Kidney Centers. Narrowed his choices down to B Braun or Aksys PHD - he chose the PHD. Had his first treatment six years ago, this month, incenter. Hard to see the illness of the other patients coming incenter. Gets a good laugh by saying that the renal nurses remind him of first Sergeants in the military - you want to control everything.

When Aksys went out of business he went on NxStage first with PureFlow, now with bags, wants PureFlow back.

9:00 Robert Lockridge, MD, Selling the Therapy: Informed Consent 

It's our job to offer this modality (HHD) - What does informed consent mean? Provides a case study of a man who shows up at the ER needing dialysis. What do you tell him? Runs through the AMA definition of Informed Consent. It's a legal and ethical responsibility.

A 1.1 Kt/V is equivalent to a 8 GFR, a 1.5 Kt/V equates to 10% GFR. Follows up with a graph showing the minimal movement of standard mortality despite achieving the clinical performance measures that have been established. Phosphorus needs time for removal, conventional dialysis can't do the job.

There are not RCTs but there are studies that can help to provide informed consent. Good data showing home dialysis provides an advantage, aside from higher frequencies. New data shows frequency improves mortality even better.

To the question of selection bias in the data the comparison should be to people looking for a cadaveric transplant an even more selected group. HHD measures up well, cites three studies showing HHD survival rivals cadaveric transplant.

Given this information what should you tell people? What do you tell the case presented at the start? Home. Home is the most appropriate venue for many people even as they wait for the call for transplant.

9:20 Brent Miller, MD, Why More is Better: Benefits -

Explains what Lockridge was saying - he was giving the finger to people who question the meaning of informed consent in the context of enrolling people in the Nocturnal Study. Heh

Wants to get beyond the data to look the benefits of more frequent dialysis. Surrogate markers may not have clinical significance. What is the role of costs? Consider the hidden costs. Rapid changes may be a significant reason for poor conventional dialysis outcomes. Cites the Freedom Study - very good outcomes. Other studies show reduction in a range of symptoms - including sleep apnea. Mortality risk of not dialyzing over the conventional dialysis weekend is about 3 (three times more likely to have sudden death), more frequent dialysis allows you to avoid the deadly weekend.

Study shows that when people are doing their own dialysis at home there are half the adverse events as they would have incenter. Study had people using the NxStage incenter with treatment run by staff, compared to 8 weeks at home with patient/care partner  running treatment. Half the adverse events at home.

Session II
Lisa Koester, MSN, RN, John Moran, MB, Presiding
10:05am - 12:00pm

10:10 Leslie Wong, MD Bridges to Home Hemodialysis: PD 

Shows data showing that when informed about options 50% will choose home, the majority will choose PD. No needles, easier, less intimidating. Data s showing that HHD draws from what would otherwise be incenter conventional HD. No data showing a strong HHD program cannibalizes a strong PD program - see NKC experience.

PD doesn't last forever, after four years data shows a big drop off. Reviews data showing where PD patients transition once they need to stop using PD. Only 1% make the transition to HHD within the first two years, transplant rates are high, of those going to HD the vast majority go incenter.

"Dialysis is an adjustable rate mortgage" you start off with a low interest rate but over time the price increases - may lead to foreclosure without a lot of work. For PD patients that face the foreclosure on their choice of modality they aren't ready to get back on the home market - most go incenter.

CKD education has to continue once someone starts PD to prepare them for the next renal replacement transition. Placement of a fistula in PD patients is marker for good CKD education. PD patients should be prepared to transition to HHD.

10:28 Debbie Brouwer, RN Self-Cannulation Practices

Incenter mostly staff cannulate, should be patient self cannulation. Patients can become the most expert cannulators of their own arm - it's all about the biofeedback. The staff push back is that it is just easier to have staff do it rather than take the time to teach. Need to start early with vessel preservation - as soon as you are identified with CKD you have to start protecting your arm vessels.

Staff misinformation is a barrier to patient use of self cannulation - "You don't need a self care certification to offer patients the option to self cannulate" it's in the conditions for coverage that patients have the right to put in their own needles. There are resources - see Home Dialysis Central for self cannulation and buttonhole information.

10:40 Susan Bray, MD, In-Center Self-Care

Offering self care is an important way to offer patients back control. Selfcare centers have to be separate from full care stations. One barrier identified as patient laziness (?, I'd say leaned dependence not laziness) it can take time but there are incremental steps. Staff and physicians need to understand the importance of self-care.

Observational data to suggest clinical benefits. Similar benefits to returning home or transplant. Successful self-care has been seen among diverse and challenging patients.

Questions: should be "care partner" vs "care giver", should fistulas be placed at the same time as PD catheters (Wong: maybe but not sure it should be a given); why the big PD drop off at 3-4 years (Wong: not clear, experience abroad is better); testimony from dialyzor who started hemo in 1966  "everything the speakers said is true); is age a barrier to HHD? (Moran I don't think so, anyone benefits from HD); testimony on the power of self care/self cannulaton

11:00 John Agar, MBBS, Designing Optimal Dialysis: Use of Kt/V and if not, What Should Replace It?

45 to 50% at home in Agar's program, 30% using HHD. What should be used instead of Kt/V? Everything else. The problems started with the NCDS study which informed the Gotch approach. THe fluid compartments of the body complicate the removal of any molecule including urea. Bottom line using Kt/V is crap naive.

The V in Kt/V is the total body water and the approach would only work if all the fluid were in a single compartment. Another definition of Kt/V (K=Killer; Treatment in fiVe years). Kt/V was useful in establishing the minimum, the bare floor of dialysis dose.

Reviews data he presented in a two part article on Home Dialysis Central (part 1; part 2)  Fluid and solute removal: how and why. I wrote three posts inspired by the articles: Dr. Agar on fluid and solute removal; More on fluid and solute removal; Optimal dialysis - beyond Kt/V; I think Dr. Agar's papers offer a great insight into a key concept. Fun to hear him present the data live.

Offers a Dialysis Key Performance Measure: 20 questions worth 1 point (example e.g. how do you feel, are you using a fistula, Hgb in range, Ca x PO in range) I scored a 20, Yes!

11:20 Bessie Young, MD, Clinical and Practical Challenges

Provides the NKC HHD experience. 63 at home (two in training) out of about 1,300 on HD. This is my experience so is very familiar. They encourage home dialysis, allow extended overnight treatments with the NxStage, allow people to dialyze alone. Provides a clear eyed view of program expectations so that patients understand what the trade offs are - it's worst to over sell then to not sell at all.

Dry weight evaluation is a challenge at home but can be accommodated during monthly clinic visits. The NKC commitment is to keep people at home but problems need to be addressed, the key is keeping communication open.

Lunch

Comments

[Erich Ditschman]

Does this meann you are inside typing furiously? We are lucky to have you. I'm cruising down Union Lake in the sunshine. See you at the awards?

[somerville]

I'd like to look at the entire dialysis phenomenon and pose a strategic and provocative question. If we assume that the goal of all medical intervention is to improve the fate of the patient, then we artificially restrict that goal if we assume that this just means improving the health of the patient, even if the intervention required to achieve this is itself a fate worse than death. Perhaps among the options for patients with endstage renal failure we should seriously emphasize the potential benefits of refusing dialysis.

Generally, all the QUALY assessments of the various dialysis modalities are heavily biologically biased and covertly assume that people are mere animals whose only goal is to stay alive for as long as possible, rather than to be vigorous, creative, spontaneous, and most of all, free. People risked a very high chance of death to escape from East Berlin to West Berlin, yet living healthy in East Germany represented only a very minor loss of freedom compared to living on dialysis. If East Berliners found the high risk of death preferable to life with the comparatively minor loss of freedom from living under a restrictive political regime, perhaps many more patients than we now realize would prefer death to dialysis? The whole 'you too can live a normal life' propaganda that accompanies the initiation of dialysis may mislead people into enduring a life they really do not want, and this may well be the most seriously unethical aspect of renal medicine.

[Peter Laird, MD]

Dear Sommerville,

The only thing unethical about American medicine is denying the same level of care seen in many other nations with as much as 2.5 times less misery and death for the sake of economic and capitalistic ventures. There is absolutely nothing what so ever unethical in dialysis itself, only in the lack of available optimal dialysis that has been shown in numerous studies to allow living a life not a lie. You imply quite incorrectly that people once started on dialysis are chained to this life without the option of simply stopping. If life on dialysis is so intolerable, then why don't we see the majority of patients choosing to stop?

The point that you miss is that life itself is valuable and precious even with physical ailments and yes, even with suffering. It is a very valuable life lesson to learn, yet some never do. When I look at Nancy Spaeth with 15 years of dialysis in addition to her transplants, Lori Hartwell likewise and Bill Peckham, the singlular similarity is a patient who has taken charge of their own care. There are some who do give up and choose death over life on dialysis, and then there are many who continue to live without apology. For myself, I see great dignity in the struggle of life on dialysis that much of which lies within my own hands and my own actions.

In contradistinction to your conjectures, people can and do choose to not live on dialysis. Yet, many, many more choose to go on as best as possible and there are many examples of those that thrive. It becomes a matter of personal choice and discipline as the main separation of those that do well and those that don't in many instances. The will to live is a strong innate human capacity. Dialysis may be a pain in the neck more often than I wish, but it is not the worst thing that has happened to me, nor to many others with wonderful stories of survival. Optimal dialysis deserves a trial of life here in America.

[somerville]

My concern is that the entire process of initiating new patients into dialysis, as well as maintaining them on dialysis, is so much suffused with upbeat propaganda about what wonderful results will be obtained that many patients are misled into accepting or persisting in treatment options they will ultimately regret. The basis of medical ethics is 'primum non noscere,' not 'primum vivere,' and sometimes encouraging life is harmful to the best interests of the patient, which transcend life.

A leading team of English nephrologists has written that dialysis is such a "miserable experience" that it "is not uncommon for patients and families to feel that the quality of life on dialysis is so poor that they would prefer to die." (J. Levy, et al, 'Oxford Handbook of Dialysis' (Oxford: Oxford University Press) 2001, p. 534) Is this made clear to patients as they are initially coaxed into dialysis and encouraged to persist in it? Is it ethical not to give this aspect of the dialysis experience proper weight in advising patients? About 25% of all dialysis patients eventually decide that they prefer death to continuing on dialysis (D. Orcopoulos, "Withdrawal from Dialysis," The Lancet, no. 246, p. 4 (1995)), and an extremely large number of dialysis patients commit suicide by even more direct methods (M. Kurella, et al, "Suicide in the United States End Stage Renal Disease Program," Journal of the American Society of Nephrology, vol. 16, p. 774 (2005)), so we have to wonder whether it was ever ethical to encourage these patients to accept suffering under a treatment modality that they would eventually realize was worse than death.

[Peter Laird, MD]

Dear Somerville, conventional incenter hemodialysis has many aspects of failure which DSEN documents constantly. What we continue to advocate for is that of optimal dialysis which is not the right choice for all patients, but it does offer much more than what you portray it to be. There is much to champion in dialysis done on a more scientific application of physiology with more frequent and longer duration options, especially the daily, nocturnal dialysis regimen. It is interesting to note that a large number of renal transplant patients are afflicted with depression and suicide as well. I could easily sit here and recite a myriad of horror stories and statistics on renal transplant that the majority of patients have no clue before undergoing that procedure as well.

Bottom line is that optimal dialysis does offer continued precious life to many that exercise this option. If that is not your personal choice so be it, but many have taken control of their life through quotidian dialysis. There are no guarantees for any medical treatment, but your continuous cynical view of any dialysis option is not representative of reality.

[Denise Eilers, RN, BSN]

Where do I start to respond? I could quote studies too, but here's a personal perspective. My husband was on conventional home hemodialysis from 1980-2004. He worked at least 50 hours per week and was at work 4 days before he died. He played way too much golf (so I thought) and spent many hours volunteering in our community. Life was very normal for us. We fit dialysis into our busy lives and we were in control!! A good life and dialysis CAN co-exist. How did we do it? One major piece of the picture is that we would "sneak" in extra treatments and also dialyzed longer (aka optimal treatment). Worse than death? I hardly think so. If it weren't for those dialysis years, I wouldn't have our son and our grandson. My husband and I would not have had 25 additional years of each other's love and company. We would not have celebrated our 35th anniversary. Our son would not have had his Dad at every single major event in his life, including his high school graduation. When I once asked my husband if it was all worth it, he looked incredulous and said simply, "Are you kidding?"