http://www.socialworktoday.com/archive/091514p20.

shtml

Nephrology Social Work: Caring for the Emotional Needs of Dialysis Patients
By Kate Jackson
Social Work Today
Vol. 14 No. 5 P. 20

Increased recognition of emotional challenges and targeted therapy to address them are helping social
workers improve outcomes.

For practitioners who want to help ease the burdens associated with chronic illness, nephrology social
work is an evolving field that offers great opportunity to improve patient outcomes and make a
significant difference in the lives of individuals who face multiple challenges.

Social workers in end-stage renal disease [ESRD] settings are important members of the
interdisciplinary treatment team because they take a person-centered approach to helping patients
meet their fullest potential socially, vocationally, emotionally, and physically, says Tiffany Washington,
PhD, MSW, an assistant professor at the University of Georgia School of Social Work. Among social
workers responsibilities are counseling, education, case management, and crisis intervention, she
says, while day-to-day tasks may include helping patients understand treatment options, locate and
access community resources, and solve adherence challenges. Equally important is the social
workers role as an advocate for policy and reforms to meet patients needs, she adds.

Increasingly, however, the nephrology social workers role has shifted to focus more on providing
clinical interventions for emotional issues that if unaddressed may erode or impede patient adherence
and improvement. Its an approach thats validated by the Centers for Medicare & Medicaid Services
(CMS), which mandates the presence of an MSW-level social worker in all dialysis clinics to help
address these emotional obstacles, as well as by leading providers of dialysis services, such as
DaVita and Fresenius Medical Care, which view targeted therapy for psychosocial issues arising from
dialysis as a standard of care.

The Emotional Challenge

ESRD, most often caused by diabetes or high blood pressure, is the ultimate point in chronic kidney
disease when the kidneys cannot filter waste and excess fluid from the body. Dialysis mechanically
removes waste when the body is no longer able to do so. With hemodialysis, the blood travels through
a tube and is filtered by an artificial kidney, while in peritoneal dialysis, a solution is introduced into the
abdomen through a catheter and is later removed. In-center hemodialysis is done three times per
week in a clinic setting, while peritoneal dialysis and home hemodialysis can be done at a time and a
location chosen by the patient.

Starting dialysis is a major life change for people with end-stage renal disease, says Joseph R.
Merighi, PhD, MSW, an associate professor at the University of Minnesota School of Social Work.
People who elect to get their hemodialysis treatment three times a week in a community-based facility
need to accommodate their new and time-consuming schedules into their livesbeing dialyzed for
three to four hours at a time on a Monday-Wednesday-Friday or Tuesday-Thursday-Saturday
schedule. Peritoneal dialysis and home hemodialysis, he notes, offer more flexibility and
independence, but remain challenging. Regardless of the treatment modality, patients will have to
carefully assess their diet and fluid intake as well as follow medication regimens that can be
challenging and burdensome.

Furthermore, Merighi says, patients may experience emotional repercussions due to treatment-related
fatigue, the need to rearrange their lives to accommodate treatment, and potential concerns about
body image. For example, they may be concerned about the arteriovenous fistula, the access point for
dialysis needles, which is not only noticeable to others but is also an ever-present reminder to patients
of the ways in which dialysis is a part of their lives.

And if its daunting for adults, its even more difficult for children. Beth Bounds, LCSW-C, a patient care
advocate and clinical social worker at Johns Hopkins Children Center, and Barbara Case, RN, a
pediatric nephrology nurse at the center, work together to help children and their families cope with
treatment. Theres a sense of loss from having to change and adjust their lifestyles, missing activities
being unable to have sleepovers with friends, for exampleor for having to be hospitalized if theyre
medically unstable, Bounds says. Loss and depression, she says, are common. Furthermore, having
to learn about the equipment and treatment protocol creates a great deal of anxiety, she says.

Particularly challenging, Washington says, is the suddenness with which many are forced to absorb all
these challenges. Early identification of kidney disease doesnt occur as often as we would hope, and
many patients learn of their diagnoses after becoming ill and seeking medical attention. Too many are
diagnosed in the hospital, she says. Its not uncommon to hear patients express feelings of fear,
uncertainty, and anxiety, particularly when dialysis is an immediate need, she says, observing that
patients have much to learn and many decisions to make all at once.

All these things together can take a toll on a persons emotional well-being because they represent
limits and losses associated with having a life-threatening chronic condition, Merighi says.

Addressing these issues isnt only crucial to improve patients emotional health but also their physical
health. All of these feelings affect quality of life, which in turn influences how individuals feel physically,
the extent to which they can maintain independence, engage in activities that are meaningful, and be
at ease in terms of body image, according to Merighi.

Some patients are resilient and develop adaptive coping strategies to manage life in light of living with
ESRD, Washington says. But research suggests that roughly one-fourth of individuals being treated
by dialysis are depressed, which can undermine important ESRD self-management tasks, she adds.
For example, in Washingtons own research (publication forthcoming), depression in patients aged 50
and older was negatively associated with fluid adherence, which can result in poor outcomes,
including congestive heart failure. Depression and poor quality of life contribute significantly to poor
health outcomes for hemodialysis patients, Merighi says. They affect the patients ability to adhere to
difficult treatment schedules, rigid dietary restrictions, and strict medication regimens.

Quality of life, says Merighi, is negatively associated with hospitalization and mortality rates. Treating
depression in the hemodialysis population is critical because it is associated with other suboptimal
patient outcomes such as poor oral medication adherence, poor patient nutritional status, and poor
appetite. And depressed patients, he adds, are less likely to be physically active or to continue
employment after starting dialysis, further eroding physical and emotional well-being.

Social Workers Making the Difference

Experts agree that the more patients consistently adhere to the treatment regimen, the more likely
they are to gain optimal outcomes. This is where social workers can make all the difference. To
improve health outcomes, social workers need to address the well-being of their patients so they are
able to self-manage in an optimal manner, to monitor their diets and fluid intake, take their medications
as prescribed, and not skip treatments, Merighi says. Social workers are an integral part of the
interdisciplinary dialysis care team. Together with nephrologists, nurses, dietitians, and patient care
technicians, social workers support patients in their management of a complex treatment regimen.
They also provide a psychosocial perspective for the team that helps put medical treatment in context.
In addition, social workers have the requisite knowledge and skills to provide clinical interventions for
patients who experience depression or a poor quality of life.

Assessing Depression and Quality of Life

Depression may occur not only in response to the emotional challenges of facing dialysis, but also
from psychological or physiological factors associated with kidney disease, Merighi says. Diagnosing
depression, he adds, can be difficult because multiple assessments may be required to uncover the
cause. Depression also can be eclipsed by other mental health conditions, making it hard to identify,
Washington says. Thats of particular concern with older patients who may be experiencing normal
physiological changes associated with aging, she explains.
The rate of depression is much higher in the hemodialysis population than in the general population,
Washington says, so social workers must be diligent in assessing for it. Nephrology social workers
should assess patients psychosocial status at the onset of ESRD and throughout treatment. Because
the setting is conducive to building and maintaining long-term rapport between patients and ESRD
staff, social workers have an opportunity to detect changes in patients emotional status early, which
can lead to earlier intervention.

The most commonly used tool to assess depression is the Kidney Disease Quality of Life (KDQOL)
survey, which is required by the CMS to be administered to dialysis patients in ESRD facilities within a
few months after treatment begins and a minimum of once per year afterward. Washington says the
KDQOL is widely used among nephrology social workers to assess patients mental and physical
functioning and the burden of ESRD. Its a useful complement to their existing psychosocial
assessments that evaluate psychosocial concerns, including current or previous experiences with
depression. Social workers, she says, may choose to embed existing, reliable depression screening
tools into their psychosocial assessment forms.

In addition to improving quality of life and adherence to necessary regimens, Merighi says decreasing
a hemodialysis patients depression or increasing their quality of life, as measured by the KDQOL,
results in greater chance of being listed for a kidney transplant. This is important because kidney
transplant patients have significantly better health outcomes and survival rates compared to
hemodialysis patients.

A Novel Approach
According to Washington, social workers continue to use evidence-based clinical approaches, such as
cognitive behavioral therapy, to address depression in ESRD patients, and at times may refer patients
to community-based agencies for long-term counseling. But, she and Merighi agree that a new
approach is making an impact on dialysis patients and the manner in which theyre treated. While
cognitive behavioral therapy is among the most popular talk therapies used in depression treatment, it
has its limitations when used to treat dialysis patients. A new approach, symptom-targeted intervention
(STI), developed by Melissa McCool, LCSW, a consultant with DaVita and the founder of STI
Innovations, has made a notable impact and is now widely used in major dialysis treatment facilities.
Merighi describes STI as a novel clinical approach to treat depression and improve quality of life in
hemodialysis patients. He says STI is an innovative, brief, and patient-centered approach that
modifies cognitive, behavioral, and mindfulness techniques to make them user-friendly for patients and
brief in their delivery. The technique was designed with fast-paced medical environments in mind and
combines elements of cognitive, behavioral, and mindfulness clinical approaches to addressing
depressions, Washington adds.

McCool developed STI after experiencing repeated frustrations when she began working in
nephrology and noticed that the patients she referred to outpatient psychotherapy would not go. The
need to address their depression was clear; therefore McCool taught herself cognitive behavioral
therapy, which she knew to be the most evidence-based approach to treating depression, and started
using it along with mindfulness techniques with her patients. She quickly found that the therapy, while
effective elsewhere, wasnt a good fit for patients in the medical setting. It took too long, and her
overwhelmed patients needed immediate help.

According to McCool, dialysis affects patients schedules, relationships, family roles, productivity,
finances, sexual function, and appearance. Patients have an emotional reaction that is usually not
acknowledged, and when they dont get help, they get stuck, she says. Most people dont plan on
going on dialysis. This isnt the life they planned or the life they thought they would have, so there is
grief. We have to help them through that, help them create a life that has meaning.

She began talking to patients to see if she could find a way to make an impact. Recognizing
depression as a cluster of interconnected symptoms, she honed in on individual aspects. I said to
patients, pick out one symptom from among your problems and well focus on it. If a patient was
troubled by insomnia, rumination, and anxiety, for example, Id ask her to pick the most bothersome
symptom, and we would focus on that symptom. My thinking was that we would work on one symptom
and then gradually get to the others. Her guiding principle was the notion that something is better than
nothing; she didnt realize she was onto something that would be effective. But when she focused on
one problem and the targeted symptom got better, all the other symptoms improved as well. There is a
domino effect. When the social worker focuses on one symptom or problem, the patient and social
worker both feel less overwhelmed by the multitude of problems. This also ensures that the sessions
are less than 20 minutes long since medical social workers have many other responsibilities and dont
have a lot of time, she says.

McCools experiment led to the founding of STI in 2009. When she shared her approach with
Stephanie Johnstone, LCSW, the regional lead social worker at Fresenius Medial Care North
American, Johnstone encouraged her to write up her approach. They worked together and created the
first STI training video. Johnstone, along with other social work leaders, designed a pilot program in
2011 involving 46 social workers who read the manual, viewed the video, and began applying the
approach with patients. The results of the pilot were dramatic: After spending only 11/2 hours with
patients over a six-week period using the intervention, patients quality of life scores increased
significantly.

Every time those scores go up by one point, you change the outcome and you decrease morbidity
and mortality, McCool says, acknowledging that when quality of life improves, adherence to treatment
improves, which results in better outcomes. Adherence was previously addressed through education.
Were flipping the whole problem on its head, encouraging social workers not to discuss adherence
issues, but rather focus on improving their patients quality of life and help them get back to their
baseline level of emotional functioning. When patients feel better emotionally, they care about things
such as taking medications and showing up for treatments.

McCool began selling an expanded version of the training manual and the video online, and the
intervention took off organically, she says. Today its used by the leading dialysis providers and has
become the standard of care.
 Kate Jackson is an editor and freelance writer based in Milford, PA, and a frequent contributor
to Social Work Today.