Is a partner REALLY necessary?

[MooseMom]

JohnJ, you are right...this isn't Australia.  But I thought the information in Dr. Agar's post was still useful as the body of an Australian isn't that much different from than of an American.  Dr. Agar has travelled the world, lecturing and attending conferences for many years, so he has a wealth of knowledge about different dialysis practices that shouldn't be ignored.  He has given his opinion as to the cultural and societal differences between Australia and the US, and I'd be interested in your thoughts.  Why do you think that there is so much more emphasis on patient independence in Oz than here?  Remember that dialysis in this country is a for-profit industry while it is not in Australia...do you think that might have something to do with the US being something of a nanny state in this regard?

I'd still really like to know what you would do if your wife could not be your care partner for a few days.  Would you attempt to dialyze alone, or would you have to go back into clinic?  And, does your wife still feel pretty confident that she remembers what to do in an emergency?  Thanks.

[fearless]

I haven't read this whole conversation, but I think it's all about liability.  My clinic has been harping on having a "care partner" since the very first mention of the even the very smallest possibility of me doing home hemo.  I'm fortunate to have someone, but I still want to do as much as I can on my own.  Because we make other people responsible for ourselves, we pay the price when we're not allowed to be resposible for ourselves!  This is just another case of efficiency and one-size fits all medical care that's delivered by big business: because there are some people who will not be able to successfully do this on their own, we'll make everyone have a care partner.  That way we're not responsible if something goes wrong.

[MooseMom]

Fearless, would you do me a favor and, when/if convenient, ask your clinic what would happen if someone wanted to do home hemo but didn't have a "care partner"?  Ask them if they think it is fair that someone who didn't have such a person should be doomed to less-than-optimal life-saving treatment just because they were widowed or divorced or alone for whatever reason.  And ask them what happens if a care partner suddenly becomes indisposed.  Is the patient supposed to then just submit themselves to crappy dialysis just because their partner might be sick or out of town?

And also, if you would, ask if they will teach you how to do a run by yourself, alone, as a precaution just in case your partner has an emergency.

I don't know why Americans have become so, well, blaming.  We seem to have to always have someone else to blame instead of relying on ourselves to train adequately.   

[fearless]

MM,
When asked the initial questions about doing home hemo, one was: is your partner going to be helping you or are you going to be trying to do this mostly by yourself?  i said I want to do as much as possible by myself.  My partner apparently needs to be there in case there's an emergency.  And, honestly, without knowing anything about the details yet, I WANT someone to be there.  But I know that eventually I won't even need that assurance, mostly because I've already faced down death, and if the risk I'm taking is that something could happen that would kill me, well, I've decided it's worth it (that's how sick I am of in-center hemo)

But, what i also know at this point is that there is no one at my clinic who can answer those questions.  Or, if they did, I already know the answers:

What would happen if no care partner? ans: no care partner, no home hemo
Is it fair that someone who didn't have such a person should be doomed to less-than-optimal dialysis?  No, it's not fair, but it's the rules we must follow. -
What if a care partner becomes indisposed?  I'll find that out I'm sure.
I think it's possible that there might be times I'll have to have the crappy dialysis again for one reason or another - but I can deal with that.

I think that because I said I want to do this as much s possible by myself they will instruct me that way.

And I will just say this to you, and you will interpret it as you will:
When you're doing home dialysis it's very important to document your compliance, attend all evaluations and submit to all examinations of your home, set-up, practices.  Meet every requirement of the monthly and annual evaluations, and show good lab results (which we all want).  But remember, at the end of the day, you're doing your dialysis unobserved and are, after all, responsible for how that happens, no matter how many people are "made" to be responsible by all the rules and regulations that are in place.

The rules and regulations are there to protect the corporations from liability, not necessarily to protect the patient from themselves.  Otherwise, they would just have us sign something that says "if I accidentally kill myself, I don't hold...(plug in corporation)...responsible."

I'm not really worried that I won't be able to do my dialysis all by myself.  My clinic just needs to know that there's going to be someone there so that they'll train me, give me my supplies, find me compliant every year, and legally meet their own requirements of accountability.
Do you understand what i'm saying?

[Bill Peckham]

I don't think it is a fear of lawsuits so much as an ingrained paternalism and on a fundimental level it is taking an approach appropriate for treating acute disease and applying it to a chronic illness.


Any sort of risk analysis would reveal that people are safer lone dialyzing frequently at home vs. dialyzing conventionally incenter. Centers don't allow it because they have not thought it through, and unless something comes along that forces them to think it through it'll stay the same. The provision of dialysis will not change on its own. In general industry believes conventional incenter dialysis is an acceptable level of treatment thus there is no point in looking at an alternative(s).

[Hemodoc]

I don't think it is a fear of lawsuits so much as an ingrained paternalism and on a fundimental level it is taking an approach appropriate for treating acute disease and applying it to a chronic illness.


Any sort of risk analysis would reveal that people are safer lone dialyzing frequently at home vs. dialyzing conventionally incenter. Centers don't allow it because they have not thought it through, and unless something comes along that forces them to think it through it'll stay the same. The provision of dialysis will not change on its own. In general industry believes conventional incenter dialysis is an acceptable level of treatment thus there is no point in looking at an alternative(s).

There is no doubt that quite a few people do home dialysis without any assistance quite well and should be allowed to do so legally as in Canada and Australia and other nations. However, those nations do not have 25% of all of the lawyers in the world as American doctors face. We are an incredibly litigious society compared to many other nations. Practicing medicine in America by necessity means looking over your shoulder with every single patient and placing the proper documentation in the chart. That is just the simply reality of practicing medicine here in America.

For those of us that worked in large HMO's, company policy and practices overseen by our own teams of liability lawyers dictates many of the aspects we must undertake. One aspect is that of the compliance officers in a large organization, many of whom are lawyers by training who certify under Federal and state compliance with all rules and regulations or face very large corporate fines. This coupled with state laws and regulations requiring care partners is the largest motivator behind the individual mandates in home training programs to have a care partner. Most states have these laws and and only a handful don't require care partners for home dialysis.

Paternalism was no longer encouraged by the time I entered medical school in the mid 1980's. The age of informed consent and autonomy dominated the ethics classes and teachings. Paternalism was soundly dismissed as an ethical paradigm and in fact, informed consent is a medical-legal requirement based on the ethics of patient autonomy. I don't believe that this is the main motivator of requiring care partners. The fear of being sued is a very real component in daily medical decisions and any doctor in America that does not take this into account and not only practice defensively, but also provide documentation will inevitably run into problems since patients suffer adverse events even when no medical errors occur. It is just the nature of practicing medicine that patients do not always do well.

In the end analysis, the fact that most states prohibit by legal statute dialysis at home alone is the biggest impediment to increasing the number of patients who could benefit and who would be capable of performing self care at home. That is the real target in my opinion.

[Bill Peckham]

I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.


I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html  Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.

[fearless]

I would like to advocate for lone home dialysis, but right now, as a patient, it's more important that I simply get out of the clinic.  I feel fortunate that we have the equipment available to do that.  Once I'm out on my own, if perchance I'm able to say: "you know what?  I had to do this without assistance and look at my great success" I will pay witness to that as loudly as I may to advocate that we be "officially" allowed.

I have already fought a few battles with my clinic, and I have lost.  When it comes to "policy" I don't have the power to make global changes, and, instead, am further ostracized.  There are probably notes in my "file" that I'm neurotic or overly anxious, because the administrators have no idea how threatening i find some of their "policies" (even though those policies are in perfect keeping with all the laws and regulations and requirements of the industry.)

I'm beginning to understand that it's about my doc too.  At the same time I transitioned from 8 yrs on PD to hemo, my doc retired.  I found my new doctor (the only other one who could serve me in home hemo in this town and at my clinic) to be much less autonomous with regards to the corporation.  I think the old guy wasn't afraid to relate directly to the patients and I think he got sick of being thwarted by "policy".  With my new doc I feel like there's an ever-so-thin separation between us, which is the influence that the corporation has over him.  I sincerely hope I'm wrong.   But I feel like I'm more on my own than ever.  Without the internet I would not know that the best dialysis is extended, slow dialysis.  My clinic doesn't allow that, so: another battle looms.  I'm seriously thinking about re-locating simply to access better care.  That really sucks. 

[Hemodoc]

I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.


I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html  Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.

Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c

I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.

[Bill Peckham]

I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.


I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html  Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.

Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c

I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.

I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.


Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.

[Hemodoc]

I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.


I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html  Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.

Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c

I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.

I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.


Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.

Bill, as in most issues with dialysis, I don't believe we are in any disagreement. What ever folks wish to call the lack of informed consent, Paternalism or the latest ethical rage of shared decision making where they supplant informed consent with decisions made in part (perhaps in whole) by the medical team.

Unfortunately, in America, it is not only malpractice that a doctor has to be concerned but the medical license as well. The medical board in CA for instance is not what people think. The teeth of the medical board is the police officers that hold the power. Medical personnel are advisory only. Yes, that is what I said, police officers. It only takes one case to lose a license and end a physicians career. To say that doctors are paranoid is to fail to understand the fishbowl we operate within. Three physicians in my group I knew of personally faced the Medical board and two of the three cases were truly beyond their influence. They were simply bad outcomes through no fault of their own. The other case was a restricted narcotic prescription without doing a physical exam. All three were publicly reprimanded.

The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.

Bill, it is a very complex mix any longer for American doctors. There are many layers of compliance that they must jump through in the course of the day.

As you noted earlier, not every state has requirements but I am not sure where to find all of the provisions in each state. Certainly, looking at health care providers, it is easier to see their requirements but the state issue is one that should be explored more as well.

[MooseMom]

fearless, I hear what you're saying, and I understand and agree with your intent.

I also understand that advocating for "lone home hemo" is not your battle to fight at this moment. 

[Bill Peckham]

I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.


I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html  Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.

Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c

I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.

I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.


Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.

Bill, as in most issues with dialysis, I don't believe we are in any disagreement. What ever folks wish to call the lack of informed consent, Paternalism or the latest ethical rage of shared decision making where they supplant informed consent with decisions made in part (perhaps in whole) by the medical team.

Unfortunately, in America, it is not only malpractice that a doctor has to be concerned but the medical license as well. The medical board in CA for instance is not what people think. The teeth of the medical board is the police officers that hold the power. Medical personnel are advisory only. Yes, that is what I said, police officers. It only takes one case to lose a license and end a physicians career. To say that doctors are paranoid is to fail to understand the fishbowl we operate within. Three physicians in my group I knew of personally faced the Medical board and two of the three cases were truly beyond their influence. They were simply bad outcomes through no fault of their own. The other case was a restricted narcotic prescription without doing a physical exam. All three were publicly reprimanded.

The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.

Bill, it is a very complex mix any longer for American doctors. There are many layers of compliance that they must jump through in the course of the day.

As you noted earlier, not every state has requirements but I am not sure where to find all of the provisions in each state. Certainly, looking at health care providers, it is easier to see their requirements but the state issue is one that should be explored more as well.

NxStage made a decision to include the requirement for a care partner in their 510K, to this day NxStage claims that the care partner requirement was something the FDA mandated - I heard this directly from NxStage's CEO - but I've also heard from FDA sources that they have no such mandate, never had and still don't. So there is a discrepancy in how it came about but one thing is certain: NxStage's 510K does not set HHD's standard of care in the US. The 510K only determines how the device may be marketed, it has no say in the practice of medicine.


To me these concerns about novel lawsuits are just another smokescreen. No one can prove a negative so it would be a fools errand for me to try but considering the conservatism that NKC evinces in all things it is not credible that their support of lone dialyzors was/is taken lightly.

[MooseMom]

The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.

Hemodoc, you have so often decried the lack of "personal responsibility" in our society today, and this pretty much proves your point.  Perhaps we have lost the knack for being personally responsible because we are no longer given any responsibility at all.  If something goes wrong, we sue, we litigate and we blame.  I wouldn't want to get my nephrologist in trouble, but to be frank, getting optimal dialysis irrespective of my partnership status is more important to me than my doctor's career.  If it were a choice between being able to dialyze at home without a care partner OR having to dialyze in clinic because to do otherwise might put my neph's career on the line, guess which one I'd choose?  But gee, I won't have that choice, will I?  God forbid that my life should be of any consequence.

[Hemodoc]

The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.

Hemodoc, you have so often decried the lack of "personal responsibility" in our society today, and this pretty much proves your point.  Perhaps we have lost the knack for being personally responsible because we are no longer given any responsibility at all.  If something goes wrong, we sue, we litigate and we blame.  I wouldn't want to get my nephrologist in trouble, but to be frank, getting optimal dialysis irrespective of my partnership status is more important to me than my doctor's career.  If it were a choice between being able to dialyze at home without a care partner OR having to dialyze in clinic because to do otherwise might put my neph's career on the line, guess which one I'd choose?  But gee, I won't have that choice, will I?  God forbid that my life should be of any consequence.

Dear Moosemom, you misunderstand my point. I have not discussed my personal choice that of course, if for some reason I didn't have a care partner, I would obviously choose to dialyze at home alone as long as I am able.

The doctors involved would need the backing of his health care administrators to do such or be a solo practictioner which is becoming few and far between. My doctor in Spokane is having to choose which ACO he will be a part of or risk losing his patients who will go to someone else. Doctos have made this choice, but if called to task, they could easily be in trouble. It all depends on the local standard of care. Seattle may be much different than other areas in the nation where home dialysis is considered a threat to the business of some dialysis directors. In that case, the local standard of care would crucify the doctor.

These are all barriers to the prescription of lone dialysis that must be first of all understood and second of all over come before the experiement that Bill has undertaken with NKC is accepted across America. There are no issues in Canada or Australia.

[Hemodoc]

I don't know what I find funnier: that docs need to be taught to be paternalistic or that docs no longer traffic in paternalism. Looking up the definition of paternalistic the only thing missing is a picture of a nephrologist.


I've discussed the NY reg http://www.billpeckham.com/from_the_sharp_end_of_the/2009/02/who-needs-to-approve-self-dialysis.html  Peter do you have any citations for any other state that has "laws and regulations requiring care partner"? I rather doubt it.

Actually with the Nephrology world, they have supplanted informed consent with another ethical paradigm called shared decision making. If you wish to call the decisions made by them under this new paradigm paternalism, fair enough, but it is really what the PRA has promoted for years: shared decision making. This is all the rage in academic medicine. WA state has a state delineating the two.

http://www.hemodoc.com/2011/04/the-slippery-slope-of-shared-decision-making.html?cid=6a0133f61818b7970b014e60575318970c

I believe that is one of the reasons that nephrology does such a terrible job of informed consent, they don't believe in this any longer.

I think it is an overreach to say that the RPA's guidance on the "Appropriate Initiation of and Withdrawal from Dialysis" has somehow changed the way the provision of dialysis is experienced in the US.


Paternalism is not an ethical framework so much as a behavioral choice, a policy or practice on the part of people in positions of authority (eg nephrologists, unit administrators) restricting the freedom and responsibilities of those subordinate to them (dialyzors) in the subordinates' supposed best interest. My point is that it is not in the dialyzor's best interests to restrict HHD access. It is perfectly clear to me that if a dialyzor wishes to lone dialyze and can demonstrate proficiency, then the provider and physician should support their decision.

Bill, as in most issues with dialysis, I don't believe we are in any disagreement. What ever folks wish to call the lack of informed consent, Paternalism or the latest ethical rage of shared decision making where they supplant informed consent with decisions made in part (perhaps in whole) by the medical team.

Unfortunately, in America, it is not only malpractice that a doctor has to be concerned but the medical license as well. The medical board in CA for instance is not what people think. The teeth of the medical board is the police officers that hold the power. Medical personnel are advisory only. Yes, that is what I said, police officers. It only takes one case to lose a license and end a physicians career. To say that doctors are paranoid is to fail to understand the fishbowl we operate within. Three physicians in my group I knew of personally faced the Medical board and two of the three cases were truly beyond their influence. They were simply bad outcomes through no fault of their own. The other case was a restricted narcotic prescription without doing a physical exam. All three were publicly reprimanded.

The reality is that as long as the standard of care is to have a partner, the majority of doctors will not risk their own career to enhance a patient's access to care. I believe that goes beyond "shared decision making," or paternalism. That doesn't make it right, but that is the reality. If an adverse outcome occurs with a patient at home without a care partner, then the doctor will in all likelihood face legal consequences on top of medical board action. The number of doctors now prosecuted in the criminal courts is growing exponentially. We have a much different situation in America than Dr. Agar in Australia where they are still reasonable.

Bill, it is a very complex mix any longer for American doctors. There are many layers of compliance that they must jump through in the course of the day.

As you noted earlier, not every state has requirements but I am not sure where to find all of the provisions in each state. Certainly, looking at health care providers, it is easier to see their requirements but the state issue is one that should be explored more as well.

NxStage made a decision to include the requirement for a care partner in their 510K, to this day NxStage claims that the care partner requirement was something the FDA mandated - I heard this directly from NxStage's CEO - but I've also heard from FDA sources that they have no such mandate, never had and still don't. So there is a discrepancy in how it came about but one thing is certain: NxStage's 510K does not set HHD's standard of care in the US. The 510K only determines how the device may be marketed, it has no say in the practice of medicine.


To me these concerns about novel lawsuits are just another smokescreen. No one can prove a negative so it would be a fools errand for me to try but considering the conservatism that NKC evinces in all things it is not credible that their support of lone dialyzors was/is taken lightly.

Bill, as you have stated many times over, your zip code will determine your dialysis care more than anything else. NKC has always been a step ahead of everyone else for years.

[amanda100wilson]

I wonder if aperson without a partner could legally challenge the situatiion that this is a discriinatory practice, particularly as thereis increasing evidence that outcomes are worse with in-unit 3x/week dialysis.  I suspect that the majority of patients would not be able to afford the cost of doing so.

[MooseMom]

Hemodoc, thanks for the explanation.  You're right...I didn't entirely understand your point.

Amanda, you know, I've often ranted the same question to my husband who happens to be a lawyer, and as such, I've developed a bad habit of looking at these kinds of things from a different perspective.  It occurred to me, like it has to you, that it might be considered discriminatory for a doctor to force a patient to have inferior treatment because of no other reason than their living arrangements.  If the quality of dialysis received in clinic was equal to that received from home hemo, then there would be no case.  But I think there is enough evidence that shows that more frequent dialysis is actually safer, and if the only place to get that safer dialysis is at home, then it begs the discrimination question.  Or at least it does in my little brain...

It just doesn't seem to be fundamentally ethical to force patients into sub-optimal treatment because they have no home partner.

[tyefly]

It really is not necessary.... I did home dialysis for almost two years and did nocturnal for a year....  I never had a care partner nor was anyone in the house......  if there was someone it was because they were visiting.....  I had no problems do everything my self.....  Everything.....  I never felt scared.....not  once.......  I was more scared going to in center  the first three months that I did dialysis than at home.......   Ok  but    In order for me to do home dialysis  I had to train with a care partner....  I believe that person came in a total of 5 times.....  she was trained on what to do if a emergency happened.....  And it was a understanding that I did have a care partner... or my insurance and clinic would not let me do home dialysis......ok    It was more important to me to do home hemo than to not....and a care person was understood and never talked about......   I hope someday  that we can get past this care partner thing.....there are many of us that can and do take good care of ourselves...   While others do need or want to have someone assist them with the home dialysis I believe that if its needed than great....  its just not that hard to do dialysis at home......  I know a couple of people who could but they dont want to bother with it...they would rather go incenter and not have to deal with any of it...... to each their own......  but I dont agree that not having a care partner could stop someone from doing home hemo....  its not right........ ok  there my three cents worth......... 

[Hemodoc]

As the market for home hemodialysis expands, this very small group today will likewise gain political power since it seems that the home dialyzors, especially those on home hemodialysis are the most vocal dialysis patients. We are now over 5000 and counting. NxStage alone has over 5000 patients in the US. I haven't seen the figures for the FMC Baby K.

There will be many in the future who have the care partner already who one day will be faced with dialyzing alone.  Since there is no medical reason that a stable home patient cannot dialyze alone, I believe it will come to pass as the standard of care. The argument that dialyzing at home is dangerous is spurious considering how dangerous a dialysis unit is to people not only in terms of hospitalizations and complications but death as well.

The more we are, the more they will listen to us and our needs. Perhaps one day, we will have all units as patient friendly as NKC. We can only hope.

[JohnJ]

My point is, that as far as I know NO US clinic allows solo home hemo for what ever reasons they have documented.
ANYONE in here who is advocating breaking the trust between doctor and patient does so at their own risk HOWEVER to advise others to do the same is asinine AND DANGEROUS. There are people who haven't even started dialysis yet reading these posts and you're telling them to ignore the training guidelines you received? Do you really think that' s a good idea?

Unitl sole home hemo is TAUGHT in the US then we shouldn't be advocating doing it. Whether you agree or disagree with the restrictions is a moot point. The POINT is we should he trying to help each other THE RIGHT WAY, not the wrong way.

Oh..and if you want to do home hemo alone...then move to Australia OR...get involved at the local and state level and get the restictions changed.

[JohnJ]

I believe that person came in a total of 5 times.....  she was trained on what to do if a emergency happened.....  And it was a understanding that I did have a care partner... or my insurance and clinic would not let me do home dialysis

So you completely ignored the restrictions placed on you. They are there for a reason..the doctors and nurses know more about this than you do.

[JohnJ]

I'd still really like to know what you would do if your wife could not be your care partner for a few days.  Would you attempt to dialyze alone, or would you have to go back into clinic?  And, does your wife still feel pretty confident that she remembers what to do in an emergency?  Thanks.

My daughter is trained to be with me too.
Yes, I would go back to the clinic as I did when I traveled recently. I traveled alone for a few days so I simply went to a local clinic. It was easy to set up and no problems what so ever as I built that time into my schedule. Everyone understood that my medical needs had to come first.

[JohnJ]

Any sort of risk analysis would reveal that people are safer lone dialyzing frequently at home vs. dialyzing conventionally incenter. Centers don't allow it because they have not thought it through, and unless something comes along that forces them to think it through it'll stay the same. The provision of dialysis will not change on its own. In general industry believes conventional incenter dialysis is an acceptable level of treatment thus there is no point in looking at an alternative(s).

Please cite where this risk analysis was done.
Or are you just making that up?

[JohnJ]

In the end analysis, the fact that most states prohibit by legal statute dialysis at home alone is the biggest impediment to increasing the number of patients who could benefit and who would be capable of performing self care at home. That is the real target in my opinion.

Thank you Dr Laird for repeating that is is ILLEGAL to do it alone. As Dr Agar pointed out the reason is simply...lawyers. But the fact is that we agreed to abide by the terms set by our clinics and until the law changes we can't simply ignore them. If to many have problems caused by no one at home with you the entire home hemo program could be halted. Then what?