A Renal Care Center...fantasy

[MooseMom]

I sent a contribution to the foundation that supports our local community hospital.  I got a thank you letter today from them, extolling how they are going to be breaking ground on a new Cancer Care center located on the hospital campus.  "This center will offer the most advanced treatments and the full continuum of care, from prevention and dectection to treatment and support.  The center will foster collaboration and communcation among patients, families and physicians translating into even better treatment plans and outcomes for those affected by cancer."

Well, you all know how this annoys me, so I'm drafting a letter basically saying that while I'm very glad that cancer patients will have this new facility (and this is the THIRD cancer care special facility in my little town!), how about a Renal Care Center?  I started making suggestions on what this fantasy facility might contain/do, and I thought I'd ask you all what you would like to see.

There is already a small, cramped dialysis facility on campus; I've been there several times to see the dietician and also to drop off and pick up my mom whenever she visited me, and it's adequate at best.  The ProPublica report on it is fine, but the premises themselves are rather drab and uninspiring.  I'd bet that the Cancer Care center will not be drab and uninspiring.  So, if there was a dedicated Renal Care center, say, adjacent to the dialysis clinic, what would you like to see?

Thanks.

[cassandra]

Aha, once in A&E when I was really ill, and freezing I got a preheated blanket. That would be nice, (its in a heating cupboard)

[MooseMom]

My original thought would be to leave the dialysis clinic alone but to have a "renal care center", say, next door.  It would be a facility that would be dedicated to the needs of renal patients, not just dialysis patients, but also those who are pre-D or who are looking for support in ways to stay off D altogether. 

I thought it would be good if there were meeting rooms so that guest speakers could give talks about CKD or about dialysis or transplant.  Or, there could be speakers about how CKD/ESRD affects whole families.  There could be classes on diet or relaxation, or there could be opportunities for home dialysis patients and their families to meet. 

Maybe there could be dedicated staff who do nothing but make travel arrangements or who offer real counselling.  It seems that most SWs in clinic are overburdened and are trying to do everything so that in the end, nothing gets done perfectly.  At my clinic, the dietician is there only part time, and she shares an office with the SW, so there's little privacy.

What would a dedicated Cancer Care center have that dialysis clinics don't have?

[brenda seal]

In this fantasy world , I think rather than having an actual facility ( though that would be nice ) , each renal patient should be assigned a " care coordinator " . When Laurie had cancer four years ago , he had his eye and parotid gland removed . His recovery necessitated seeing many health professionals , speech pathologists , dietitians , oncologists , head and neck surgeons , plastic surgeons and so on . He was assigned a care coordinator nurse who liaised between the various departments and ensured everything ran smoothly and also took into account his emotional state .
As the person looking after him , I found this nurse invaluable - I felt supported and secure knowing we could call on her to sort out any problems .
Being new to the dialysis world and also absorbing the fact that this is forever , I would have really appreciated some guidance . Whilst the nurses at the dialysis clinic are wonderful , the clinic is only open 8am to 4pm Monday to Friday and between times , the only avenue open is an already overstretched and busy ER dept. We have already hit a few hurdles since Laurie began dialysis in January - fluid overload , peritonitis , critical Hg and a hernia and sometimes it feels like banging your head against a brick wall and trying to get through a very dense fog !
Nobody has ever shown concern for Laurie's emotional state - which at present is far from healthy . I just yearn for a central figure - like the care coordinator nurse - who we can count on to be on our side . I am certain all renal patients would benefit from such a service as the illness is so multi -faceted .

[justme15]

let's see, maybe  an area where the public could come in and get blood pressure/blood sugar checked.
definitely a dietician/nutritionist to give advice on renal diet, and maybe have some renal diet cooking classes
maybe have it's own pharmacy, with a pharmacist that has special knowledge of meds common to renal patients and their side effects/interactions, and is also knowledgeable of insurance related to esrd and medication coverage
a small physical therapy area so that the patients can get a home exercise program tailored to their needs
I've seen flyers for wigs in the cancer clinics, well ESRD patients have hair issues too! so maybe info or discounts on wigs/hair care
info/references for transportation or maybe start a volunteer transportation service to take esrd patients to/from dialysis.

these ar just some  thoughts I had... i can only dream.

[amanda100wilson]

Yes, maybe there should be more emphasis  onpre-screening but I do believe that I've just read somewhere that the powers to be who make such decisions have deemed that it isn't worth it.

[MooseMom]

Yes, maybe there should be more emphasis  onpre-screening but I do believe that I've just read somewhere that the powers to be who make such decisions have deemed that it isn't worth it.

Well, then why is this new super duper cancer center going to have a "full continuum of care", including "prevention"?  CKD/ESRD/dialysis/tx are all stupidly expensive.  The powers that be who say it's not worth it probably own dialysis clinics or have some financial gain from keeping people sick.   Dialysis is a booming business.  It impoverishes the patients and enriches the providers.

BrendaSeal and justme15, you have some terrific ideas!

[Jean]

Maybe some carpeting in the room and some draperies of some sort. For every shift a person who comes in and brings the patients some cold water or tea and a little snack. One special person who comes around and rubs legs for the crampers, and maybe gets heated blankets for patients. I am not even on D yet, but I think anything that takes away the sterility feeling of the room would be nice.

[AguynamedKim]

I've looked a little bit at this dialysis center in Houston and it seems like it would be a nicer place for dialysis: http://www.dialyspa.com/. They have a photo gallery where you can see some of the amenities listed below.


Rich amenities

Welcoming, friendly staff
Professionally designed décor with warm colors and textures and a soothing waterwall
Ambiant lighting with no bright, clinical lighting
18 heated dialysis chairs
Flat-panel televisions at each heated dialysis chair
Internet access via touch-screen monitors at each heated dialysis chair
Complimentary coffee and crushed ice bar
Industry-leading 3:1 patient to technician ratios (versus industry standard of 4:1) and 9:1 patient to nurse ratios (versus industry standard of 12:1) for the most attentive care available
Open Monday-Friday, 5 a.m. – 9 p.m., and Saturday and Sunday by appointment, for maximum flexibility

Best-in-class treatment

Strict non-reuse policy meaning Dialyspa does not reuse any disposable part of the dialysis modalities, including the dialysis filters that act as artificial kidneys during dialysis treatments
Isolation room for at-risk patients
In-home dialysis care and training
On-site grief and stress-management counseling
Insurance paperwork and financial-assistance program guidance

[amanda100wilson]

The article that I was referring to was posted on kidneydoctor.org.

"A few days ago the U.S. Preventive Services Task Force published draft recommendations on CKD  based on an evidence review that was published in the Annals of Internal Medicine on April 17, 2012 that was reviewed here and also available on their web-site.

The USPSTF draft recommendations are sobering reading. Why so?

Here are 5 statements from the USPSTF report:
There is inadequate evidence that routine screening for CKD improves clinical outcomes for asymptomatic adults.
There is inadequate evidence on the harms of screening for CKD. However, there is convincing evidence that medications used to treat early CKD may have side effects.
There is no generally accepted risk assessment tool for CKD or risk for complications of CKD. Diabetes and hypertension are well established risk factors with a strong link to CKD. Other risk factors for CKD include older age, cardiovascular disease, obesity, and family history.
While there is insufficient evidence to recommend routine screening, the tests often suggested for screening that are feasible in primary care include testing the urine for protein (microalbuminuria or macroalbuminuria) and testing the blood for serum creatinine to estimate GFR. No studies have evaluated the sensitivity and specificity of one-time testing with either or both tests for diagnosis of CKD, defined as decreased kidney function or kidney damage persisting for at least 3 months.
Treatment for early stages of CKD is generally targeted to comorbid conditions, such as diabetes, hypertension, and cardiovascular disease, to reduce the risk for complications and progression of CKD. These treatments include blood pressure medications (particularly angiotensin-converting enzyme inhibitors and angiotensin II–receptor blockers), lipid-lowering agents, and diet."

Personally, I think your suggestions are a great idea.

[jeannea]

Recently I was involved in a legal case with my long term disability insurance company. They completely lowballed me on the settlement because according to their calculations I would die in 4 years. That's the reason there is no renal care center. Everyone thinks we're going to die soon anyway and nobody wants to deal with us. I know it's not true because so many people here are on dialysis for a long time. But I believe it's the perception.

[cattlekid]

Okay, MM you knew that I wouldn’t be able to resist this topic.  I’ve just been so stinking busy this week that I haven’t had much time to sit down and write.

I think that a “renal care center” needs to focus on the needs of the whole person along with the care partners as well.  So here are my ideas, some have been expressed already in previous posts but I’m just free-writing here:

1.    A bright, modern facility.  Not a dump carved out of a basement somewhere.
2.   If this center is to provide actual dialysis services:
   a.    It should be staffed for five shifts, including an evening shift and a nocturnal shift
   b.   The actual dialysis clinic should be decorated in a soothing manner and provide adequate space between patients.
   c.   Coffee, tea, ice chips and water should be provided.
   d.   Wi-Fi should be provided and functional as well as cable TV with adequate programming and headphones if patients do not bring their own.
   e.   Portable DVD players should be available for those patients who wish to watch their own DVDs during treatments.
  f.   Dialysis chairs should be heated and have a massage function.
  g.   Pillows and heated blankets should be provided.
  h.   Patients should be provided the option of self-care (cannulate themselves, set up their own machines). 
3.    Dedicated, private space should be available for patient consultations with Social Workers, dietitians, physicians and psychiatrists.
4.   Space should be provided for access to complementary therapies, including but not limited to exercise classes, massage therapy and physical therapy.  These complementary therapies should be provided at low or no cost to the patients.
5.   Space should be provided for educational sessions on a variety of topics of interest to the renal patient, pre-renal patients and caregivers.  These educational sessions should be provided at low or no cost to the attendees.
6.   Patients that utilize the renal care center for their dialysis services should be allowed their own choice of nephrologists.  They should not be limited to the nephrologist that is the medical director of the center. 
7.   All Social Workers, dietitians and psychiatrists working at this center should have specialized training in dealing with renal patients and pre-renal patients.  Special emphasis should be given to techniques to keep patients working if this is their choice or to rehabilitate non-working patients to allow them to return to work. 
8.   Patients should have constant, immediate access to all medical records including full lab workups.  Ideally, this access would be computerized and real-time.
9.   Space should be provided for a renal library, including access to online medical journals at no cost to the patient. 
10.   Parking lots and sidewalks should be spacious, well-lit and kept free of debris, ice and snow.  Dedicated parking should be available for in-center patients who drive themselves to treatments.  Harsh penalties should be levied for individuals or transport companies who continuously block parking spaces, driveways and sidewalks while waiting for patients.

Oof…that’s all that I can think of for now.  Can you tell I have spent some time writing Information Technology requirements? LOL

[Bill Peckham]

My original thought would be to leave the dialysis clinic alone but to have a "renal care center", say, next door.  It would be a facility that would be dedicated to the needs of renal patients, not just dialysis patients, but also those who are pre-D or who are looking for support in ways to stay off D altogether. 

I thought it would be good if there were meeting rooms so that guest speakers could give talks about CKD or about dialysis or transplant.  Or, there could be speakers about how CKD/ESRD affects whole families.  There could be classes on diet or relaxation, or there could be opportunities for home dialysis patients and their families to meet. 

Maybe there could be dedicated staff who do nothing but make travel arrangements or who offer real counselling.  It seems that most SWs in clinic are overburdened and are trying to do everything so that in the end, nothing gets done perfectly.  At my clinic, the dietician is there only part time, and she shares an office with the SW, so there's little privacy.

What would a dedicated Cancer Care center have that dialysis clinics don't have?

Sounds like you're talking about Northwest Kidney Centers Haviland Kidney Center remodel
http://www.nwkidney.org/docs/aboutUs/news/4.19.12_northwest-kidney-centers-launches-capital-campaign.pdf

[MooseMom]

Oh Bill, that's brilliant!  I want to go there!

I am mostly done with my letter, but I'm going to add suggestions offered by all of you, and I'm going to print out the info Bill provided about NWKC remodel, and I will send it all off early next week.  I doubt anything will come of it, but you never know.  Why not start the big renal reform locally, right? 

Thanks, everyone!

[brenda seal]

Good luck MooseMom , I admire what you are doing . The heated chairs sound very comforting !

[WishIKnew]

MM - just wanted to share my support for what you're doing!

[dialysisadvocate]

Moosemom, you can email me directly rmiklesrn@aol.com  we might be able to help you with this project -- there are some more questions.. often this is all about money....
Roberta

[MooseMom]

Roberta, thanks so much for you offer; I may take you up on that in the future.  I am not really sure how far I will be able to take this; yes, it is about money.  But what chaps my butt is the fact that this hospital does a lot of very successful and lucrative fundraising; I've donated on many occasions.  A few years ago, they opened a new inpatient wing that is just out of this world!  I know because I recovered from surgery in one of these lovely rooms.  But despite all of this money, there is nothing for renal patients.
 
I want to make sure you all think I have a valid complaint or observation.  Here is the link to the hospital's website.  See if you can find any mention of support services for kidney patients like there are for cancer patients...

http://delnor.com/default.cfm

Am I waffling about nothing?  Please tell me if I am missing something here!

Another thing...Delnor has teamed up with Central DuPage hospital to become "Cadence Health".  Central DuPage has entered into an affiliation with The Cleveland Clinic in order to expand their cardiac care.  That's great!  They are also affiiliated with Children's Memorial Hospital, so pediatric care has expanded, too.  Delnor has won all sorts of awards for "patient experience" and such, so I have no complaint about what they DO provide.  Again, it's just that there is nothing for renal patients.  CKD is hardly a niche illness! 

Amanda, I read that blog entry on The Kidney Doctor, and while it may be true that there is no specific tool for identifying CKD in "asymptomatic patients", that doesn't mean that we have NOTHING to help us identify people with reduced renal function.  My feeling is that CKD and ESRD are such catastrophic illnesses (not to mention the expense of dialysis and transplant) that primary care physicians should be on the front line of identification.  Sometimes medicine has to veer from being a science to being an art.  But most people with CKD have diabetes or hypertension or some other co-morbidity, so a renal care center that focuses on preventing CKD in these patients from becoming ESRD would be extremely useful. 

[Lillupie]

ok,
 Im sorry people. Not to be doom and gloom. Although I totally agree with this, it wont work.
 Im with JennaB that the notion is that we are going to die anyway.
 If you look up the average life expectancy is 5 years on dialysis, + most people on dialysis are older, + the majority of dialysis is paid for by the government.

 I got the feeling and please correct me if Im wrong, there are many more cancer patients then there are dialysis patients.

There are about 400,000 people on dialysis nationwide in a nation with about 300,000,000 people, and a number of those are waiting for a transplant or end up dying. I think the general attitude is "why bother, they are going to die anyway". Especially if the people are older.
 Some people with cancer can with treatment sometimes go into remisson. Not on dialysis. So, why bother?
 We live in a capatialistic society, and the big wigs make money from the government off of diaysis patients.

 On a side note, please dont get mad. I do NOT want a national health care plan, because i feel out healthcare will end up like dialysis and with added rules and regulations, because its for free.

At somepoint Medicare picks up the dialysis tab. if every single one of us still qualified for private insurance or Medicare did NOT pay for dialysis, you bet ESRD would be a major problem to our economy.
 Cancer costs insurance too much money and they want to make people "feel good" and free of cancer so they are inremission on their way.

I have thought about this myself. Please dont get mad at me. I have been jealous of those who have cancer. I would much rather have brain cancer and pancreatic (sp?) cancer then dialysis. after treatment it is over and done with, you either die or are in remission (normal life to me), it doesnt continue with years and years of pure torture and hell. Although I do know a lady who has had cancer for 13 years without remission, and she can eat whatever she wants and I nearly started to cry on hearing that. Eating what I want without horse pills, dream.

just my two cents.

Lisa

[dialysisadvocate]

MooseMom - we have contacts that are advocacy oriented in the hospital area -- There are many in the area and I can send a query out to see if any of the hospital patient advocates would want to get involved -- I have helped them often, and in fact, I am an appointed member of an advisory committee to our state's dept of health that focuses on infection prevention in the hospital setting. We might be able to work something and get some more powerful people to see the need. Studies would have to be conducted e.g. how many dialysis patients presently, how many who might need dialysis in the next year or two...etc... we might be able to, in the least, get heads turned to start thinking -- or writing a letter to the paper === an op ed
Roberta Mikles Dialysis Patient Safety Advocate www.qualitysafepatientcare.com   I am betting that it is, as someone stated, about money.. with the new QIP I am not sure providers make as much as they did when they were milking the epogen reimbursement system.
opinions of roberta mikles

Roberta, thanks so much for you offer; I may take you up on that in the future.  I am not really sure how far I will be able to take this; yes, it is about money.  But what chaps my butt is the fact that this hospital does a lot of very successful and lucrative fundraising; I've donated on many occasions.  A few years ago, they opened a new inpatient wing that is just out of this world!  I know because I recovered from surgery in one of these lovely rooms.  But despite all of this money, there is nothing for renal patients.
 
I want to make sure you all think I have a valid complaint or observation.  Here is the link to the hospital's website.  See if you can find any mention of support services for kidney patients like there are for cancer patients...

http://delnor.com/default.cfm

Am I waffling about nothing?  Please tell me if I am missing something here!

Another thing...Delnor has teamed up with Central DuPage hospital to become "Cadence Health".  Central DuPage has entered into an affiliation with The Cleveland Clinic in order to expand their cardiac care.  That's great!  They are also affiiliated with Children's Memorial Hospital, so pediatric care has expanded, too.  Delnor has won all sorts of awards for "patient experience" and such, so I have no complaint about what they DO provide.  Again, it's just that there is nothing for renal patients.  CKD is hardly a niche illness! 

Amanda, I read that blog entry on The Kidney Doctor, and while it may be true that there is no specific tool for identifying CKD in "asymptomatic patients", that doesn't mean that we have NOTHING to help us identify people with reduced renal function.  My feeling is that CKD and ESRD are such catastrophic illnesses (not to mention the expense of dialysis and transplant) that primary care physicians should be on the front line of identification.  Sometimes medicine has to veer from being a science to being an art.  But most people with CKD have diabetes or hypertension or some other co-morbidity, so a renal care center that focuses on preventing CKD in these patients from becoming ESRD would be extremely useful.

[WishIKnew]

@ lillupuie - Speaking from experience, being jealous of someone with cancer is ridiculous.  Yes, my cancer is gone (for now, and the fear of recurrence NEVER goes away) but so are my breasts!  To say that a cancer is better because you either die or it's gone is naive, to say the least.  Cancer is never "gone".  Dialysis, both PD and Hemo, sucks, and, as I'm learning, even transplant has it's difficulties, but to compare dialysis and cancer is absolutely crazy.  I would wish neither on anyone. 

Let us not, in our valiant fight for better dialysis/renal care, undermine the importance of quality cancer treatment.  Let's fight for the health and well being of all!

[Bill Peckham]

Look at who pays for the procedure and you can pretty much explain why the money goes to birthing suites, cardiac units and infusion centers.

For over 85% of the dialysis treatments in this country Medicare and Medicaid are the primary payers. 85%

The only other healthcare category with that payer mix is skilled nursing. The local skilled nursing facility that serves Medicaid beneficiaries is at the bottom of the payer mix scale but after that you come to dialysis facilities.

As far as the feel/look of dialysis units I would correlate it to the payer mix in the community for an individual unit, on a state wide basis I think the most important correlation is to Medicaid payments. In states where Medicaid reimbursement is low, suppressing average reimbursement, dialysis facilities will be worse and likely the care will be worse.

It isn't the up front costs that constrain dialysis services it is the ongoing costs, for the lifetime of the person being dialyzed and compared to other medical procedures dialysis does not generate the cash flow to support amenities.

[MooseMom]

Lillupie,    No one will be mad at you.  I can understand how you could feel this way.  I don't blame you one bit.

But not all cancer is curable.  I know one lady who has had cancer most of her life; she will never be rid of it, just as we will never be rid of kidney disease, but she has access to better support and facilities than I do.  I don't begrudge her or ANY patient any support they get, but I'd like to have some, too.  My point is that many cancers are chronic.

Everyone dies at some point of something, but we can still work to alleviate the suffering.

But I want to reiterate that this fantasy facility wouldn't serve only dialysis patients, but, rather,  would strive to serve anyone touched by kidney disease.  Everyone, go follow the link that Bill provided that outlines the remodelling of the renal care facility in Seattle.  Why does this facility have to be the only one of its kind in the US?  Those people in Seattle aren't sitting around thinking, "Well, those dialysis patients are just going to die, anyway, so why bother?"

Yes, there are more people with cancer than there are on dialysis, but there are not more people with cancer than there are with CKD and/or diabetes and/or hypertension that all can lead to ESRD.  Many cancers are now decreasing in occurrence whereas CKD is headed upward.

Bill, I see your point about how most dialysis treatments are paid for by Medicare and Medicaid, so there is not the cash flow to support amenities.  But isn't it probably true that most cancers and most heart problems are seen in the same population, ie the older and poorer population?  Why is it possible to dream of a renal care center in Seattle but not in other parts of the US?  What's unique about Seattle?  Is it because there is that history of dialysis sort of beginning there?  And who will be paying the ongoing costs of that center?  Do you know?

Roberta, I'm going to send an initial letter to the head of the Delnor Foundation in an effort to ascertain why there seems to be so much support for cardiac and cancer patients but not for renal patients.  There might be a good reason.  Perhaps demographic studies show, as you suggest, that there is not that much need for such services but that I live in an area where there are many, many more times the number of cancer patients than any other kind of patient (but, really...FOUR outpatient care centers?  Really?).  I am going to include a copy of the article from NW Kidney Center in Seattle to show that this is not something I've just made up.  At what point do you think it would be best for you and your group to put out some feelers?  I am a little hesitant to be too shrill and critical because I am not yet on dialysis so do not feel best placed to make specific criticisms.  I am speaking as a pre-D patient who has looked into support services available in my area and has found none whereas other patient populations seem far better served.

[Bill Peckham]

Bill, I see your point about how most dialysis treatments are paid for by Medicare and Medicaid, so there is not the cash flow to support amenities.  But isn't it probably true that most cancers and most heart problems are seen in the same population, ie the older and poorer population?  Why is it possible to dream of a renal care center in Seattle but not in other parts of the US?  What's unique about Seattle?  Is it because there is that history of dialysis sort of beginning there?  And who will be paying the ongoing costs of that center?  Do you know?

We fund raise out here to maintain the community benefits, but even as nonprofits go Northwest Kidney Centers is a unique institution.

Cancer and heart centers have payer mixes that are a lot better. For hospitals around here I hear it's about 50/50 but for some procedures it is 70% private/30% public. From Google here is a benchmark case mix for a surgical centers:

Medicare: 25 percent
Medicaid: 5 percent
Commercial: 59 percent
Workers' comp: 6 percent
Self-pay: 5 percent
Other: 7 percent

That payer mix would comprehensively fund the provision of dialysis.

[MaryJoe]

MooseMom, I think you raise some very important issues, and I'll be eagerly following this thread to see the results of your efforts.  Being fairly new to the renal world i am appalled at the lack of local resours es for pre-dyalysis patients and family members.  I called both of the hospitals in my immediate area when I was first diagnosed looking for support groups and educational opportunities.  Nada!  They do have limited resours es for dialysis patients, but those of us who are pred-D seem to be on our own.  I called the nearest dialysis clinic and was told they had tried that in the past and there wasn't enough interest, besides, the would teach me everything I would need to know when (not if) my kidneys get bad enough to need dialysis!  Uh-huh, I want these people sticking sharp objects into my arteries!

MJ