Dialysis patient empowerment: what, why, and how

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Dialysis Patient Empowerment: What, Why, and How
Dori Schatell, MS; Beth Witten, MSW, ACSW, LSCSW
The goal should be 100% of patients doing 50% of their own care and 50% of patients
doing 100% of their care. – Chris Blagg, MD
Empowered Patients are Expert Patients
From the perspective of the Life Options program (www.lifeoptions.org), an
“empowered” patient is an expert patient—one equipped through knowledge and attitude
to take an active role in self-managing his or her kidney disease. You can recognize
empowered, expert patients because they know themselves and their bodies very well.
They may track their blood tests in a notebook, tell the technician how much fluid they
want to remove, and put in their own needles. They may be the mentors you call on to
help orient frightened, new patients.
Patients need to become experts, because even if they dialyze in-center, they are only
supervised by professionals in the clinic for about 14 hours a week—just 8% of their total
time. (See Figure 1). The other 92% of the time, they are on their own, and they are self-
managing—for better or worse—with each bite of food, each drink, each medication,
each treatment, and each symptom. Self-management includes a trio of tasks: following
the treatment plan, maintaining safety (e.g., by access monitoring, or by noticing and
preventing errors), and reporting their symptoms so the care team can assess whether
intervention is needed. The reality is, care provided by the clinic is only half of the
outcomes equation. Patient involvement and follow-through is the other half.
Time at
dialysis
8%
Time on
own
92%

Figure 1: Self-management Time
Patient Benefits of Empowerment
When patients find out their kidneys are failing, they lose their sense of control over their
lives. Learning self-management and becoming an expert can help patients regain their
sense of control, or self-efficacy—confidence in one’s ability to master a task. Research
with long-term peritoneal dialysis (PD) survivors
i
and hemodialysis (HD) survivors
ii
found that having a sense of control was key to successful adaptation to kidney failure.
In fact, one of four “affirmations” made by HD patients who had survived for 15 years or
more was “I am in control.”
iii
. A recent series of studies from Taiwan found that self-
efficacy explained an astounding 47.5% of the variance in 160 dialysis patients’ quality
of life
iv
, that patients randomized to structured self-efficacy training had significantly
lower intradialytic weight gains than controls
v
, and that patients randomized to an
empowerment group had significantly greater self-care self-efficacy and less depression
than controls
vi
.
Beyond control and self-efficacy, Life Options research has found that patients who were
more knowledgeable about their care scored higher on the mental component summary
(MCS) of the MOS SF-12, and patients who actively took part in certain aspects of self-
management had higher physical component summary (PCS) scores.
vii
Higher MCS and
PCS scores, in turn, predict fewer hospitalizations and lower mortality rates.
viii
Empowered, expert patients who are working-age may also be able to stay in better
health and maintain a job—which confers self-esteem, higher income than disability will
pay, and often health insurance.
Clinic Benefits of Patient Empowerment
For clinics, patients who keep their jobs can provide significant extra revenue—and
empowered working-age patients may be more likely to seek out a clinic that offers a
work-friendly schedule or home modality. Not surprisingly, patients who chose PD or
transplant (USRDS numbers for home HD were too small to analyze) were significantly
more likely to have kept their jobs between six months prior and initiation of renal
replacement therapy than patients on in-center HD.
ix
Among new patients who were
working full time, Life Options research found that 72% had coverage through an
employer group health plan (EGHP).
9
On average, EGHPs pay about $350 per dialysis
session—more than three times the Medicare rate—plus higher reimbursement for
separately billable drugs and supplies.
x
Across the industry, while just 25% of patients
have EGHP primary coverage in any given year, this insurance provides 50% of dialysis
clinic revenues.
10
Clinics benefit when empowered patients of any age keep themselves healthier and avoid
hospital stays. In addition, empowered patients are more rewarding to work with.
Programming to enhance patient knowledge, physical and vocational functioning, and
emotional well-being in dialysis—all factors involved in empowerment—has been linked
to reduced staff turnover and improved patient outcomes.
xi

Barriers to Patient Empowerment
Why aren’t more patients empowered today? We believe there are several key reasons:
• The dialysis industry provides care using an acute disease model, where professionals
are the knowledgeable experts and the job of patients is to comply. But this model
doesn’t fit chronic disease, where the goal of treatment is not a cure, but adjustment
and day-to-day symptom management, and long-term survival requires that patients
self-manage independently, consulting with their care teams as equals. Changing
over to an empowering chronic disease model will require a sea change in staff
attitudes and behavior. In the meantime, power struggles that can occur when expert
patients disagree with staff, are stressful to both, and may even contribute to patient
mortality.
1
• Patients who are new to dialysis rarely know much about it, and the learning curve is
steep. Ignorance about kidney disease and its treatment may be systematically
mistaken for an inability to learn. This perception is compounded by a lack of
annual, national data collection on patient education level—though nearly every other
conceivable demographic characteristic is measured and reported. Problems with
health literacy are by no means limited to dialysis. Individuals who are more likely to
lack health literacy include immigrants, minorities, and those over age 60.
xii
But
health literacy can be improved.
• New patients may also be terrified, angry, depressed, and overwhelmed. Their fear
and denial may lead staff to believe that they don’t want to learn and/or don’t want a
role in their care. Since 92% of patients begin dialysis on in-center HD
xiii
, patients
also become passive and dependent and expect to be cared for, and obtain the
impression that only a professional can administer a dialysis treatment.
• Some physicians or staff refuse to allow patients to engage in in-center self-
management activities such as determining their fluid goals, setting up their
machines, or even learning to do self-cannulation, a skill that could reduce costs and
extend the lifespan of grafts or fistulas. Excuses are many and varied, but often the
fear of liability is among them. We could not find a single case where a patient who
was trained to do self-care or home dialysis sued a clinic. In fact, most lawsuits in
dialysis occur when patients are dependent on staff and an error is made. Given this
fact, why are clinics afraid to teach patients the same skills they teach technicians,
most of whom had no prior medical training either?
• Self-care or home dialysis—which are intrinsically empowering because patients are
trained to do these treatments themselves—are not widely enough available, and
patients often don’t even know they exist. In a large national study, only about 25%
of patients reported having been told about PD or home HD
xiv
, and only 9% of
patients currently do any type of home dialysis.
13
How to Empower Your Patients

In an ideal world, every clinic would be able to offer its patients predialysis education
classes, which have been found to slow progression to end-stage,
xv
and structured classes
in empowerment, which can apparently be quite effective
5,6
. But unfortunately, resources
are stretched to the limit in U.S. dialysis clinics, and this is simply not feasible under
current Medicare reimbursement and with a variety of staffing shortages.* Still, there is
much we can do.
Simply realizing how vitally important control, self-efficacy, and empowerment are to
patients is a first step. No-one accidentally—or passively—survives for decades on
dialysis. In a chronic disease model, the job of dialysis professionals is not merely to
provide care: it is to prepare patients to manage their own care during all of those hours
when they are on their own. This role is much more empowering for staff as well as
patients. To paraphrase the proverb, instead of giving patients a fish, we can and should
teach them to fish—and they will do better for a lifetime. All members of the team can
look for and take advantage of “teachable moments.” Encourage questions; be askable.
Asking knowledgeable patients to mentor new patients can help reduce fear and set a
good example.
A second step is to demystify the process of dialysis and create an expectation that
patients will be as involved in their own care as possible, starting when they are
diagnosed with chronic kidney disease. In a recent large study, Stack & Martin (2005)
found that patients who reported an active role in choosing their treatment modality had a
39% lower risk of death and were also significantly more likely to get a transplant than
patients who did not.
xvi
Longstanding patients sometimes misinterpret efforts to get them
more involved, believing that staff are trying to shirk their duties. But new patients don’t
know what to expect, so it may be easier to indoctrinate them into an active self-
management role that will help to empower them, particularly when the focus is on
what’s in it for them. Using a series of ascending self-care steps (See Figure 2) may help
clinics to define CQI goals and document their efforts to empower patients.

8b. Insert hemodialysis needles with assistance.
8a. Set up and take down dialysis machine.
6b. Know where access shouldn’t be cannulated.
6a. Know the rotational pattern for cannulating their access.
5d. Know dry weight and how much fluid should be removed.
5c. Know steps to alleviate common, non-life-threatening symptoms (i.e., hypotension, cramping).
5b. Know when fluid replacement is needed.
5a. Know what the machine alarms mean.
4e. Explain basic principles of dialysis and how the machine works.
4d. Take and record BP.
4c. Know what symptoms to report during and off dialysis.
4b. Report symptoms during and off dialysis (i.e., edema, shortness of breath, chest pain, dizziness, fever).
4a. Verify dialyzer & ask if it has been appropriately reprocessed, primed, & checked for disinfectant (if applicable).
3e. Take and record temperature, blood pressure, and weight.
3d. Be able to describe usual post-dialysis access dressing.
3c. Know direction of flow in the access (arterial and venous side).
3b. Perform skin prep on access.
3a. Put pressure on access site after needle removal.
2b. Recite and participate in facility emergency procedures for fire, earthquake, weather-related emergencies.
2a. Recite the steps of an emergency disconnect from the dialysis machine.
9b Insert hemodialysis needles unassisted.
9a. Know how to troubleshoot dialysis machine (i.e., power or
water failure, dialyzer leak, air in the lines, serious symptoms).
7e. Know medication purpose, dosage, and frequency during dialysis.
7d. Know what normal lab values are and how theirs compare (potassium, phosphorus,
calcium, BUN, Hct, albumin, Kt/V/URR, PTH. Diabetics should know their HgbA1c).
7c. Know if the machine is set up appropriately (correct dialysate flow, sodium modeling,
heparin pump settings, TMP/UF rate).
7b. Know their desired and usual blood flow rate.
7a. Know own normal venous and arterial pressure.
1d. Know type of access, check blood flow daily, protect access from blood draws/IVs/BPs, report symptoms (i.e., swelling, redness, loss of sensation).
1c. Prepare station with personal items (i.e., blankets, books, craft materials, food and drink if unit policy permits, etc.).
1b. Tear tape strips to be used on access.
1a. Know name, purpose, dose, & frequency of medications taken off dialysis.
Figure 2: Example of Self-Care Steps
Bridging the Barriers: A Practical Guide to Renal Rehabilitation, Life Options
A third step is to encourage patients to dialyze at home, either with PD or home HD.
Home dialysis empowers patients to dialyze to live, rather than live for dialysis. Home
therapies make working—and continued employer group coverage—far more likely.
And the continuous forms of home HD also allow for much less rigid dietary and fluid
restrictions and fewer symptoms (less feeling tired, cramping, dizziness, shortness of
breath, or feeling cold) for a better quality of life.
xvii
Technicians across the nation learn
how to do dialysis every day, and for them, dialysis is a job. For a patient, dialysis means
life. Schrieber et al (2000) found among 11,000 patients that predialysis modality
education increased the percent of patients choosing home dialysis (in this case PD) to
40%.
xviii
This suggests that patients’ interest in and willingness to do home dialysis has
been systematically underestimated. In terms of the multitasking, manual dexterity,
visual acuity, life-and-death outcomes, and need for several weeks of training, learning
home dialysis is very much like driving a car. Many of your patients drive—and those
who can’t may have someone to drive them who could be a home dialysis partner.
In conclusion, we hope this article will help you see that almost any patient has the
potential to be empowered, even if they resist it at first. Putting the initial investment in
time and effort into empowering your patients has the potential payoff of helping your
patients live longer with better quality of life, saving your clinic money and improving

clinic revenues, and reducing your job stress and improving your job satisfaction. The
ball is in your court. What will you do with it?
Empowerment Tools and Resources
• Kidney School™ (www.kidneyschool.org), Life Options’ research-based self-
management learning center. On-line modules are interactive; downloadable pdfs are
also available. Patients, family members, and staff new to dialysis will benefit.
• Home Dialysis Central (www.homedialysis.org), offers information to raise
awareness and use of five types of PD and home hemo.
• Living a Healthy Life With Chronic Conditions; 2nd Edition: Self-Management of
Heart Disease, Arthritis, Stroke, Diabetes, Asthma, Bronchitis, Emphysema & Others.
by Kate Lorig RN DrPH, Halsted Holman MD, David Sobel MD, Diana Laurent
MPH, Virginia González MPH, and Marian Minor RPT PhD. Bull Publishing, 2000.
• Patient Education: A Practical Approach; 3rd Edition. by Kate Lorig and
Associates. SAGE Publications, 2000.
*The Kidney Care Quality & Improvement Act (S. 635/HR 1298) includes provisions to
fund pilot programs in predialysis education and to study barriers to home dialysis, as
well as an annual update for dialysis reimbursement. Contact your elected federal
representatives about sponsorship of these important bills.
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i
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ii
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iii
Curtin RB, Mapes D, Petillo M, Oberley E. Long-term dialysis survivors: a transformational experience.
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iv
Tsay SL, Healstead M. Self-care self-efficacy, depression, and quality of life among patients receiving
hemodialysis in Taiwan. Int J Nurs Stud. 39(3):245-51, 2002
v
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vi
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vii
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viii
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ix
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x
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xi
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xii
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xiii
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xiv
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xv
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xvi
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xvii
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xviii
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