It’s Time to Go Home

By Peter Laird, MD

In November of last year, I went to Los Angeles for my evaluation for home hemodialysis with the NxStage cycler. It seemed like an eternity while I waited for the call to set up my home evaluation which finally came last week. Tomorrow afternoon, I will meet with the nurse, the social worker and the technician who are involved with my home care. Strangely, the day after I received the call, I returned to my dialysis unit feeling as if a large burden had been lifted from my shoulders. Of a certainty, I dialyze in an extraordinary unit where the annual mortality statistics have fallen from about 20% down to 7% last year in just a few short years. The care is exceptional, yet in many ways, simply dialyzing in unit means that I have lost much of my independence that I so greatly cherish.

I will frankly admit that after spending nine years in the Army and being promoted to the rank of major, as well as nearly 20 years as a practicing physician, I am not use to following house rules, especially having people tell me what to do when I know what I'm doing. Perhaps it is unresolved adolescent authority issues which I resolved by becoming an authority myself, but in fact, in the last two years since starting in center hemodialysis , I have had staff mock me in front of other patients, abandon me to go home while a needle was hanging out of my arm but still needing assistance to hook up to the machine as I was learning to do self care in center, and then I had an RN become incensed when I refused to use a blood collection tube that had fallen on the floor. It had accidentally fallen on then floor and I then threw it in the trash. She picked it up out of the trash can and told me to use it after she wiped it off with alcohol. After fuming for about 30 seconds silently, I firmly asked the lead RN to get me a new tube and threw the contaminated tube away once and for all.

In Idaho last summer on my first trip since starting dialysis in February of 2007, the unit director scolded me not to use the sink across from my chair and to use the patient sink out in the hallway. I dutifully proceeded out into the hall and found out that she had locked the unit door behind me when I returned. On my second day at my unit in Cape Cod later that summer the lead RN greeted me at the door as I came in within five minutes of my scheduled time saying “Come in, come in, you’re, late, Hurry up and get in here.” I heard that same scold with several other patients over the 5 weeks that I was there.

I could keep going on with my own encounters, but I have also heard my fellow dialyzors advising the techs to reduce the UF rate because they believed their dry weight was too low only to see them become hypotensive later because the tech refused to consider their input. Having been involved in medicine since the mid 1980’s, I am keenly aware of the ethical concept of patient autonomy. I am also keenly aware that since I have entered into incenter hemodialysis , I have had to fight hard to keep any semblance of patient autonomy. I will frankly admit that I am not an easy patient to contain due to my bull headed nature at times, yet that seems apt considering the last two years experimentation in cattle call lines. It is time to go home. But what about all those fellow dialyzors that I will leave behind? Those that can't go home.

I remember a classic experiment I read about years ago on what happens to prison guards and how the authority that they have can get out of control with their prisoners who must get permission for all of their needs and are shackled and placed in confined spaces. Is it possible that we have a similar psychological paradigm where dialysis patients are completely at the mercy and control of their staff who also inflict pain on a daily basis? I will leave it for others to answer such a loaded question, but I would firmly advise all of my medical colleagues to get tough skin if they ever end up in my position. I will ask a further question: what is the cause of all of the stress and depression that dialysis patients undergo? Perhaps it is not all related to the underlying renal disease nor the dialysis treatment itself.

Unless dialysis staff work diligently to engage patients with respect for their autonomy, it is easy to see why so many of my fellow patients become very passive and do not participate in their care. Bill has used the term sheeple for these passive patients. I wonder how many have simply given up after being subdued by staff that treat us as one more anonymous body in the cattle call line that many dialysis centers have entrenched.

Comments

[janice]

Sometimes, the people who are supposed to conduct our plan of care adds more to our affliction rather than make us feel better. Unless some higher authority does something about this then such madness would continue happening.

[Tracy Lynn]

In defense of the care providers, I have seen them deal very patiently with mean and demanding people, seen them sworn at, kicked, bitten, punched.

The dialysis process involves both parties being respectful, otherwise it all goes to hell.

I only really had a problem with one person in my history of in unit dialysis, and I am also bull headed. One has to be to advocate for oneself. The rest of the time I was treated very well, and I still drop into my old units to say hi.

All that being said, home hemo is so much better. :-)

[Miriam Lippel Blum]

I'm so glad that you're finally getting to move your treatment home. I can empathize with that feeling of burden lifting as I also felt that when I got the call that my wait for was over. I have experienced all the demoralizing and dangerous things you described and more. I think that it is even harder for you, as a physician, since you are even more aware of what is correct and how dangerous things can be. My husband is also an MD and he would get so upset about the things he saw happen in the unit and the way I was treated sometimes. It offended him as a professional and as a human being.

As patients, we are so often condescended to and patronized and manipulated into being docile and cooperative. Even the word "compliance" is troublesome to me...jailed prisoners are forced to comply and children are. Losing our kidney function should not make us second-class citizens.

[Zach]

Perhaps a shout out is necessary to the national conference call hosted by NKF, which will discuss "Know Your Rights and Responsibilities" on Wednesday, Feb. 11, 2009 from 3 PM to 4:30 PM ET.

The panel will include a CMS representative, an ESRD network coordinator and a dialysis facility consultant.

These "Conversations" are free but registration is required. For more information and to register visit www.kidney.org/coffeehouse or call 888.JOIN.NKF.

[Peter Laird, MD]

Tracy, thank you for your defense of many excellent care takers who do the right things in center and out of center. In fact, my entire adult life has been devoted to being as good a care taker as I could myself. Perhaps that makes me more aware when something is not right. My home visit should be with in the next hour as my wife busily prepares her already immaculate house and I will then prepare a post going over my HMO and their home care team. This is the same HMO that I dedicated my professional career as well. I believe that you will see that I do applaud all that do well, giving honour unto whom honour is do.

My main point is to show that there may be an institutional effect in dialysis units since I have seen the same type of staff behavior in all seven of the dialysis units I have been in during the last two years. Further, there are some that do not extend patient autonomy at all. For those without the knowledge and the background to know what is expected of a health care professional, it is easy to see why some patients become very passive.

And, yes, it is a two way street where patients need to be agreable as well. I have only seen a few occassions where the patients were out of line, but literally dozens where the staff went over the top. Anyone sitting on the sharp end of the needle knows that it is very easy to lose your independence and patient autonomy as a dialysis patient. They definitely have the upper hand.

Miriam, I share your husbands offense at the lack of professionalism I have seen. Not to despare that all of my treatment has been unprofessional since it has not. In fact, I am preparing another post on my home visit and the professionals that are making this possible. Zach will get a little surprise since his last link he sent me provided me with the incentive for this upcoming post. Hopefully out tomorrow.

Zach, thank you as always for links and wisdom. I'll take a look at this coffeehouse. Your input is always appreciated at DSEN.

In summary, my post was just an observation of how life changed dramatically for me from the privileged status of a being a physician to the true cattle call that I have seen in many places where my MD didn't matter at all. Imagine telling someone to use the sink outside and then locking the unit door behind me when I went into the hallway. Is she a unit director or is she a drill instructor? If it wasn't so rediculous, I might have actually lost my temper, but instead it simply stunned me.

Yes, I readily acknowledge that I have benefited greatly from many dedicated professionals who have taught me how to care for myself with complicated machines. Without them, without my dedicated nephrologist, I would not be feeling like any sort of human being at the present time and for those that do right, I shall indeed compliment their efforts as does DSEN always.

If anyone else has examples illustrating what they have experienced, Bill greatly appreciates your input.

[Peter Laird, MD]

Janice, thank you for your link and your comments. I do believe as well that the administrative leaders in the dialysis units need to make this a top priority for all patients. Good leaders lead to good outcomes. For those that do and have, I tip my hat to you to continue to serve forward as the good examples that you are and to encourage your colleagues to do likewise.

[Zach]

As one who is quickly approaching his 27th year of in-center hemodialysis, I can appreciate your question: But what about all those fellow dialyzors that I will leave behind? Those that can't go home.

[Miriam Lippel Blum]

Peter,
I have had some wonderful professionals take care of me at dialysis centers and also some really abysmal ones. I have been at centers that go out of their way to help dialyzors be as knowledgeable and self-sufficient, as possible, and at centers that are quite the opposite. I think that the attitudes of the upper management, in general, really set the tone for how the nurses and techs are. Those who really care about their patients look for employees who reflect their values and follow up to see that they do. They also make the ir units places that their employees want to work in. Contented nurses and techs make for better care for the patients.

[Anonymous]

In one dialysis center I was left in pain due to a misplaced fistula, severe pain, for 3 months as well as having a tech. who could not place needles and had taken fluid off of me in error and could have killed me if I had not noticed assigned permanently to me as my only tech. in retaliation for complaining about the incident in which fluid was taken off of a patient with DI who was constantly dehydrated and no nurse coming to check me out afterwards. My pain was discounted as in my head. Later at another hospital an old PIC line was found inside my fistula which meant I had a fistula created over a fistula and blood flowing in two directions. Also later I met the tech. who was so bad at her job in another position entirely not in dialysis care but it was a few years later so apparently it took them that long to get rid of her. My other center was completely different because the nephrologist walked through every single shift almost and certainly every day. In the hospital unit the charge nurse ran the unit and fellows were the doctors if you were lucky enough to be assigned one which I was not.

There were good nurses and techs. at this place but they were never allowed to intervene to help patients and I suspect a lot of them moved on to other jobs when they could.

[Rich Berkowitz]

Peter, welcome to the world of HHD and NxStage. However, if you were ever critical of the in-center staff, just wait til you get home and have to deal with yourself. I have to admit that at times I have been the most incompetent, especially when I'm on automatic pilot and my wires get screwed up. But I wouldn't trade it for anything and , if possible, never go back to center again. Even when I've had to go to the hospital, the staff knows not to touch my fistula -- they even have BH needles in case I show up.

You'll be a welcomed addition to NxStage_Users. I'm sure we'll be able to learn my you, but also know you'll be able to learn from us as well. Join Bill, Mimi, a bunch of others and me at http://www.health.groups.yahoo.com/group/NxStage_Users.

[Tracy Lynn]

Thanks, Peter. I think too that the age of the standard patient, most of whom are older, makes it harder for them to be assertive in their care.

This is one of the reasons I support standardized training. I think it may better prepare caregivers for the challenge of caring for chronically ill patients.

And I have to say that I much preferred the care I have received at my non profit center to that at the for profit centers. It has seemed more patient centric.

[Peter Laird, MD]

Thanks Anonymous, Rich and Tracy. DSEN strives to be a voice of reason for optimal dialysis. Perhaps we rant a little too much at times, but in general, it is our hope to be the sounding board for important issues whether of the industry in general or of upfront and personal issues. To the extent that we have accomplished that task, it is our hope that others will gain strength to echo the sentiments of optimal dialysis to their medical staff at every opportunity.

[Pete]

This post was comforting to me. The last three weeks have been extraordinary because of events at my dialysis clinic. I'm a PD patient, and I've cycled in and out of anemia for a long time. The reason cited was always that MediCare mandated a 25% epo reduction. In mid January, I brought a copy of that MediCare document to my clinic and showed it to the neph and the rest of the staff. The rule clearly says that it does not apply to home dialysis patients. Their reaction? Deer in headlights.

I asked them what alogrithm for reduction did apply to me and could I have a copy of it? All hell broke loose. The clinic really tried to boot me from the clinic, but they haven't come up with anything in my records to indicate that I'm non-compliant. Now, they want me to change to not clinic neph. All because I followed their directive to become involved in my care and asked for a copy of the algorithm. By the way, the clinic's algorithm would have only reduced by 10%, a reasonable amount.

Please spread the word! Home dialysis patients are not subject to the MediCare rule. Some other rule will apply, and you should get a copy. This clinics policy of "no retaliation" is BS.

[Peter Laird, MD]

Pete, thank you for your comments. I did not touch upon the retaliation issue simply because I do not want to pour salt on old wounds. Yet it is real and it can be devastating. Hang tough and do your research. Who better to be our advocate than ourselves. A well informed patient population is essential to optimal hemodialysis.

On the other hand my wife keeps trying to teach me that honey is better than vinegar in getting results. As others have said, it is a two way street.

[Dori]

In-center dialysis = outpatient institutionalization, Peter. That's really what it comes down to. When you are in an institution, there are rules and policies to be followed which may be in your best interests--or may be for the convenience of the staff or for cost savings at your expense. I remember watching a made-for-TV movie about people with mental disabilities who won the right to be cared for in the "least restrictive setting." For dialysis, it's pretty clear that the "least restrictive setting" is home.

Interestingly, most of the literature on longer and/or more frequent hemodialysis supports a whole host of benefits that start with better quality of life and end with survival that is comparable to transplant. This isn't too surprising, since the dialysis is, after all, longer and/or more frequent. But Saner et al (http://www.ncbi.nlm.nih.gov/pubmed/15665030) did a study where they matched 3x/week standard HOME HD patients with 3x/week standard IN-CENTER patients. Same treatment, different locale. Survival at home was about 50% better.

It's important for folks to realize that you DON'T have to be a doctor to do home dialysis. You really only need to have the skill set to drive a car. Just about anyone can drive a car. This isn't rocket science, and newer equipment keeps making the technical side of treatment easier. Folks with ESRD who are otherwise in good shape should be training to do the lion's share of their treatment by themselves (needles too!) to avoid overburdening a partner. Home HD does not have to be delivered using an in-center model with a passive patient cared for by a live-in "nurse." If the dialyzor has had a stroke or is otherwise very ill, that will obviously be different, but even very ill people may start to feel a lot better when they get more dialysis, and then they should start to take on as much of the dialysis as they are able. More of those folks in the center may be able to go home than you think...

[Peter Laird, MD]

Thanks Dori for the link. When I asked my wife to assist in my in center care in preparation for home dialysis, I made the commitment at that time to take care of the machine and do all of the needle work. It has been a good division of labor and she is now my most trusted assistant. After all, she has a stake in my future as well.

I also agree with Dori that you do not need to be a physician to do home hemodialysis. Interestingly, all of this is new to me and outside of my medical experience as an internal medicine physician. The background helps, but it did not prepare me for all that I still need to learn. in such, i am turning to my fellow patients for their advice on how to proceed. There is much wisdom in this group, sometimes more than my colleagues.

[Alison Hymes]

Dori you are truly a wise and brilliant woman to make that connection. Thank you.