I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: kickingandscreaming on June 16, 2016, 04:45:07 PM
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Blog post from Home Dialysis Central: http://homedialysis.org/news-and-research/blog/156-unwitting-victims-or-informed-medical-consumers-how-are-dialysis-patients-viewed-by-their-nurses-and-staff
Unwitting Victims or Informed Medical Consumers? How are Dialysis Patients Viewed by Their Nurses and Staff?
On May 31, 2016 Nephrology News & Issues, a highly respected trade publication that reports on developments in nephrology and dialysis treatment, carried an interview with Francyne N. Rosenstock, Vice President of Business Development and Marketing for Renal Reserve entitled Reducing Dialysis Nurse Burnout. 1 Renal Reserve is a medical staffing agency specializing in supplying dialysis centers with long-term (13-week) traveling nurses and permanent RNs, licensed practical/vocational nurses, patient care technicians, registered dietitians, and social workers. They understand and deal with the causes of staff turnover at U.S. dialysis centers.
When asked if burnout is more common among dialysis nurses, compared to other specialties, Ms. Rosenstock said, "This is not a simple yes or no answer. I think nursing, in general, has a higher burnout rate than other disciplines in health care because nurses are on the front lines of patient care. They have a connection to their patients, especially patients who they are involved with over a long period of time. Outcomes, good or bad, affect them."
She went on to say, "Dialysis nurses know that when it comes to dialysis, death is always lurking. So the question is ‘when’ not ‘if,’ because dialysis is about delaying death, not curing the disease. In other disciplines, nurses have hope for reversing a disease, unlike dialysis nurses who know they will lose their patients eventually. This has to affect a nurse. Dialysis nurses are a special breed, compassionate and dedicated to their patients, but eventually, the gloom does contribute to burning out."
Asked if fewer nurses are choosing to go into dialysis, she said,"Yes. It is not as 'glamorous' a career as other disciplines such as ER, labor and delivery or ICU. It does not pay as well as other disciplines even though dialysis nurses are highly skilled. It’s not a 'happy' discipline because dialysis nurses are providing palliative care, not aiding in curing a patient.
So, is that the way to view dialysis: as palliative, end-of-life-treatment? If this is true—and I doubt all dialysis nurses feel this way—then we patients are all lost; victimized again, not as people who happen to have kidney failure, but as time-dated specimens with limited shelf life, like stray dogs and cats in the local animal pound. This view is intolerable and unconscionable! And it totally ignores viable treatment options like home dialysis and kidney transplantation.
Unfortunately Ms. Rosenstock's attitude toward dialysis is not an isolated example, but is found too often among many medical professionals who work for for-profit, in-center dialysis providers. A handful of these companies dominate dialysis treatment in the U.S. There, profit takes precedence over patient care, in spite of the generally benevolent publicity these companies normally disseminate. I can't point to any formal studies or surveys indicating this attitude. (Bad news from such patient surveys would attract unwanted attention.) But continuing anecdotal evidence between patients, of whom I am one, corroborate my point. This attitude permeates an industry that for too long has treated people with kidney failure as unwitting victims, not educable consumers seeking the best treatment. And it's an attitude that encourages passivity and depression among the majority of its patients.2
There is little argument that most dialysis nurses, and for that matter dialysis social workers, are dedicated individuals who are overworked, mired in non-nursing paper work, much of it required by insurance and government entities. Patient care suffers as a result. And patient education on effective, safer, and less-costly home dialysis is often ignored or overlooked, resulting in fewer than 11% of the 500,000+ people on dialysis in the U.S. doing home dialysis.3 This in spite of the fact that more than 90% of nephrologists, when asked, would choose home dialysis if their own kidneys failed.4
Much of it I blame on the profit motive—the biggest barrier to any significant change in the way we provide dialysis in the U.S. Ongoing consolidation among the few, large dialysis providers is not helping bring change. They are for-profit corporations built on the business model of providing a standardized treatment: one-size-fits-all. They make money by filling more chairs in their dialysis centers with more people over a limited time each day. And even with this model, their profits are being squeezed by Medicare's bundled reimbursement plan.5 Add to this Congress's reluctance to allocate adequate funds for home modality training, and change is very unlikely.6
I believe that technological advancement in the form of implantable or wearable artificial kidneys, like those being developed at the University of California at San Francisco, Vanderbilt University7 and the University of Washington8 - will finally offer kidney patients a viable alternative to the outmoded standard of 3-day-per-week, in-center dialysis, which according to Ms. Rosenstock, is like waiting for death.
Nephrology in the U.S. is particularly backward. It has been unable for decades to significantly reduce the mortality rate among new dialysis patients, which at the current of 17%, is more than double that of other advanced nations in Europe and Japan.9 Clinical trials in nephrology have for too long been overly concerned with medical process and not consumer-desired results. Those results must include core quality-of-life issues if patient health is to markedly improve.10
Research is academically driven and too often concerned with only quantifiable medical data. Narrative data—the lifeblood of American consumer business—is largely ignored. Consumers are given choices, while dialysis patients are assumed to be helpless, depressed, and uneducable.
My experience as a highly informed and involved patient includes in-center, home hemodialysis and transplantation, as well as participating on hospital quality committees, regional dialysis oversight organizations, and mentoring other patients on their treatment options. It has made me aware of the insular nature of medical practice in the United States. By that, I mean the inability and often conscious disregard to learn from other fields, like consumer marketing, on how to understand and reach patients to achieve better health outcomes at less pain and cost. Motivation is the key to changing attitudes. But you cannot motivate if you are unwilling to listen or assume you know best what patients desire most.
A positive case in point is related by Dr. Jose Morfin, nephrologist at the University of California at Davis. His early intervention staff interviews new patients in the hospital at Davis, patients who are going on dialysis for the first time. They are asked what they need most to continue to live active, useful lives. Many of his patients are laborers with large families. Most say, "I need to get back to work to support my family." They are then offered home dialysis options, which 18% freely choose and are motivated to do.11
I can cite numerous of examples of people on dialysis, many of them patient advocates like myself, who work fulltime, participate in sports and other physical activities, travel widely, raise families and enjoy life fully while accommodating their need for kidney replacement therapy. It's not rocket science; it is all about patient education and personal desire.
It's not my intention to make Ms. Rosenstock, or for that matter any other dialysis professional, the object of derision, but rather to wake them up to the reality of the new patient-centered marketplace. Change is inevitable, and the old dialysis standards will be replaced by newer technology that better serves the patient's need to live a full, active life, no matter how long that may be. Dialysis technology and therapy should accommodate the patient's lifestyle, not the other way around. Waiting for death is never a solution.
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Great article. Glad you found it as I never would have.
Spells it out very well. At least so I think.
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The center I go to is co owned by a local hospital and a major dialysis company. The deal was done years ago and is quite restrictive on staffing. The nurses contract sets staffing requirements that have at a minimum 4 nurses for 18 chairs. That does not include a nurse manager. Techs cover 3 chairs instead of the required 4 that is the standard staffing set by law. On my shift the newest member has 14 years on the job at the unit. Better pay, higher staffing levels has eliminated turnover. The only turnover is caused by retirement. As a patient I think the staff is carving and very good at their job. Clearly if the industry wants to deal with turnover better pay, and higher staffing levels would go a long way to reduce turnover
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I dont want to die from much. I keep an eye out for the artificial and lab grown kidneys and will jump at any chance to get any of these asap. I am scared of dieing before one of these becomes a reality. I watch the developments of these and want to keep my neph aware of these and see what he can do about it.
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RE: So, is that the way to view dialysis: as palliative, end-of-life-treatment?
I overhead the techs and nurse talking about an older patient that came in all drained, not responsive, very low blood pressure and how within a few weeks the patient was responsive, looking good and doesn't have the low blood pressure problem. That made me think that yes it might be near end of life but you don't really know upfront if it will be more of a cure or just a step on the way to death.
There is another elderly patent who has lost both legs, months ago she looked fairly slow and unresponsive (she might have recently experienced an amputation), these days she looks alert and responds when I great her as if she has recovered a lot of strength and is going to keep kicking for a long time. (She doesn't appear to speak English so I see the response to my English in Spanish to mean she is doing fairly well...)
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Wow, this is really eye opening.
When I started in-center hemo three months ago, I was so weak I could barely walk. I'm still taking things slow, but I'm strong enough now to walk my dog, run errands, and get out of the house most days. I sleep a lot, sure, but it feels a lot more balanced. The nurses and techs often say they can tell I am starting to feel better and they're really supportive.
I don't feel like I've been written off at all.
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I don't feel so written off like other people might. IDK why it seems this way. In Canada, it seems very good and less of a shotgun dialysis manner. I even felt better after dialysis as they used my fistula in total and never tried the line now in my chest. We eyed the line just in case it couldn't have been done through the fistula. Perfect fistula use with NO beeping or any funny stuff. I couldn't have been happier at ALL! Good job I MADE myself go today, despite no sleep last night. I called the nurse and talked about not going, but gave up and said, What the hell, I will go anyway to dialysis. The nurse was PLEASED that I backed up and actually went.
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We are all waiting for death, dialysis patient or not.
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Since I have been on dialysis 6 out of 18 patients have died but most were well into their 80's and died of cancer, heart attacks, or other common causes, only one died of what could be blamed on his kidneys, he was not compliment, drank too much did not follow diet and regularly cane in 4 or 5 kilos over. Finally his heart went from the strain.
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I don't understand what part of "dialysis is delaying death, not curing the disease" is so controversial? That is precisely how I've been informed about how things will pan out when on dialysis. Straight from the mouths of a number of renal practitioners.
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I don't understand what part of "dialysis is delaying death, not curing the disease" is so controversial? That is precisely how I've been informed about how things will pan out when on dialysis. Straight from the mouths of a number of renal practitioners.
Yup, and they also chant the mantra "transplant is a treatment, not a cure".
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Yeah dialysis is extending my wife's life....just like statins are extending mine :)
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I don't think it as life extending but sort of a bridge to the future when better treatments become available.
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I don't understand what part of "dialysis is delaying death, not curing the disease" is so controversial? That is precisely how I've been informed about how things will pan out when on dialysis. Straight from the mouths of a number of renal practitioners.
Yup, and they also chant the mantra "transplant is a treatment, not a cure".
Simon, truth be told, I only seem to hear that from honest patients who have been through the grinder with transplantation & are ready to tell it like it is. Kidney advocacy groups and other self-serving entities tend to describe organ transplantation as the 'gift of life" and other emotionally charged feel-good phrases that makes it all sound like it is the next best thing to a cure. It is far from that.
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I don't think it as life extending but sort of a bridge to the future when better treatments become available.
Well said Michael, that's how I like to view this whole deal to be perfectly honest. I put my faith into believing that better treatments will arrive in the near future.
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sound like it is the next best thing to a cure. It is far from that.
They just had one of those annoying "man needs kidney" articles in the local paper.
- Great guy, looking or kidney - check
- Life on dialysis is absolute hell - check
- Call this number if you can donate an organ - check
- General discussion of shortage - check
Absolutely no mention that it is possible for anyone to have a life worth living while on D.
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The nurse at my unit knits 2 to 3 hats a night. Her burnout would be knitting.
:waiting;