Unemployment among dialysis patients is a complex issue

[okarol]

Unemployment among dialysis patients is a complex issue
Anyone familiar with dialysis knows that the issue of unemployment among dialysis patients is far more complicated than a simple sense of entitlement, or laziness
 
REBECCA ZUMOFF — JANUARY 6, 2016

Last month, a ProPublica interview with a nephrology nurse who was critical of what she called dialysis patients’ “sense of entitlement” struck a nerve with our readers. Dialysis patients and nurses took to our comment section, and social media, to express their opinions.

The interview touched on the larger issues of dialysis patient employment and rehabilitation, dialysis adequacy, and compliance. The nurse, Pamela Dougherty, lamented that only a fraction of her 54 dialysis patients had jobs. Anyone familiar with dialysis knows that the issue of unemployment among dialysis patients is far more complicated than a simple sense of entitlement, or laziness

“Home Dialyzors United believes that far more patients would choose to work if they had access to better treatments, work friendly scheduling, and comprehensive rehabilitation,” HDU president Denise Eilers, BSN, RN, wrote. “Ideal treatments include home peritoneal dialysis, home hemodialysis, and nocturnal dialysis.”

“The ability to work is intimately tied to a person’s sense of self-worth, and the original intent of the Medicare End-Stage Renal Disease (ESRD) Program was to keep patients employed and productive,” Eilers wrote in a recent article for the Renal Support Network.

But many patients find it hard to maintain a job while following a dialysis center’s schedule. And the treatment itself can hinder a patient’s ability to work. ESRD patients Maggie Carey and Derek Forfang wrote an article for NephrologyNews.com that explains why some dialysis patients never return to work.

“Many dialysis patients do not achieve a state of health that can be considered normal,” wrote Carey and Forfang, who are chairs of the Kidney Patient Advisory Council for the Forum of ESRD Networks. “We operate with a more limited supply of energy and stamina and many ESRD patients have additional health issues (diabetes, heart disease, etc.) that impede our ability to meet all of life’s challenges. We suffer great losses; strength, vitality, energy, our ‘place’ in our family and our community, our jobs, careers, hobbies and recreational activities. We lose control of our time, our futures and our bodily functions.”

Many patients cannot work, but more of them could if given the chance. “How can dialysis providers help?” Mark Neumann asked in a recent NN&I article. “By accommodating patients with late-night shifts, in-center nocturnal programs, and interceding with employers. In a 2008 study by Kutner et al., the authors found that employment rate was positively associated independently with availability of a 5 p.m. or later dialysis shift, with peritoneal dialysis or home hemodialysis training, and provision of more frequent hemodialysis. In addition, patient receipt of vocational rehabilitation services was more often reported in facilities with higher employment rates.”

Eiler’s husband was an accountant when he was diagnosed with ESRD in 1980. “With Jerry working fifty or more hours a week, the flexibility of home dialysis was a perfect fit,” Eilers wrote in NN&I’s upcoming February issue. “We juggled dialysis days depending on his business travel or our social outings.”

Unemployment is a complex issue, in all segments of society. “Health is a factor in unemployment,” Carey and Forfang wrote. “So is education, job training, local employment opportunities, transportation infrastructure, ad infinitum. While home dialysis, where applicable, can help with scheduling difficulties and can improve health outcomes in some, it is not a cure all for the unemployment rate that is systemic within a community.”

Carey and Forfang are right. There is no cure-all for anything, really. Health care professionals know this better than anyone. But we can’t ignore the problem. We must work to apply remedies, create new solutions, and remain empathetic.


http://www.nephrologynews.com/unemployment-among-dialysis-patients-is-a-complex-issue/

[iolaire]

Many patients cannot work, but more of them could if given the chance. “How can dialysis providers help?” Mark Neumann asked in a recent NN&I article. “By accommodating patients with late-night shifts, in-center nocturnal programs, and interceding with employers. In a 2008 study by Kutner et al., the authors found that employment rate was positively associated independently with availability of a 5 p.m. or later dialysis shift, with peritoneal dialysis or home hemodialysis training, and provision of more frequent hemodialysis. In addition, patient receipt of vocational rehabilitation services was more often reported in facilities with higher employment rates.”

I complexly agree with this.  I'm lucky enough to have a desk job with the same company for 17 years - so they are happy to work with my schedule...

I don't see how someone in more physical labor based job, including retail/restaurants could maintain employment on the 6/11/3 shift schedule that is at my center.  As far as I know only one center in my area does nocturnal (around Tysons corner) and that's fairly far out from the Northern VA area close in to DC.  Being that far out it requires you to have your own transportation as its too far for a cab and there is no public transportation when you get out at 3-5 am.  (Meaning its not really nocturnal, but just a at night shift that dumps you out too early for regular work.)

[Charlie B53]

I have great respect for those on Dialysis that have the strength, endurance, and drive to continue working.  You people amaze me.

I seriously miss working.  As a mechanic on everything from outboards to heavy equipment on tracks, (no cars) every day brought new problems to solve.  I had to use my brain to test before taking anything apart so that I would know better what I was needing to do without wasting both time and energy or spending customers money on needless parts.

Physically I was always kept in shape, not just the near constant squeezing, pushing, pulling, lifting, but just as often the walking, down and up hills, or out onto the marina docks, carrying my bag of tools that I expected to need.  Often repeated trips as unknowns often pop up requiring other tools or parts.

I miss the customers gratitude after finishing my work.  Especially after solving peculiarly strange cases that had already stumped other shops and mechanics.  Already costing the customer a lot in unnecessary work and parts that did little to nothing in curing the original problem.

A couple of years before starting Dialysis I began weakening so much that I could no longer get about.  Simply standing most the day wasn't only overly exhausting, but my legs bagan swellilng so fat that they constantly 'leaked' and those sites easily became infected. often landing me in the Hospital for two weeks at a time.  The infections accelerating the rapid failure of my kidneys until my Dr's told me retire or die.

That was a no brainer.

What I wouldn't give to have that strength and endurance back again so I could return to work.  To feel like I am useful again.

[Vt Big Rig]

Like iolaire I am lucky enough to basically have a desk job. When my health started going south my boss made it into even more of a desk job.

There are days  since starting dialysis I wish he would lighten up a little.

But then there are other days I am so tired I just want to go home. I stay with it however, both for financial reasons and because when I go home dear wife is waiting with needles for the next treatment.

Sometimes I think she is getting back at me for unknown sins ...

Just kidding dear!!!!!

[iolaire]

Simply standing most the day wasn't only overly exhausting, but my legs bagan swellilng so fat that they constantly 'leaked' and those sites easily became infected. often landing me in the Hospital for two weeks at a time.  The infections accelerating the rapid failure of my kidneys until my Dr's told me retire or die.

Do you mind me asking of the leg swelling was caused by dialysis or diabetes ?

[Simon Dog]

Anyone familiar with dialysis knows that the issue of unemployment among dialysis patients is far more complicated than a simple sense of entitlement, or laziness

I work for the difference between what I would get going to a job vs. staying home.   Prior to dialysis, what I would get for staying home was $0, so I worked for my pay.   Now, I work for less than half my former pay.

So, dialysis has reduced my pay drastically, since the difference between my pay, and disability pay (under a private long term disability policy that is better than Medicare), is less than half of what I was "making" before dialysis.  Add in the kick in the nuts from the federal government in which I am charged an "earner's penalty" on my Medicare premium, and work is even less lucrative.    If I were a rational person, and not a techno-nerd who cannot imagine life without going to the office to fight with Kerberos and Hadoop, I would have quit long ago.   The incentives to "not work" are powerful.