For a nephrology social worker, a typical day is busy and varied and presents opportunity to work with patients, clinicians, and other healthcare professionals. A specialized field in healthcare social work, nephrology social work focuses on patients with end-stage renal disease (ESRD), a chronic illness requiring lifelong treatment (see sidebar). Over the next two decades, ESRD is expected to become even more prevalent, and increasing numbers of ESRD patients translate to growth in opportunities for nephrology social workers.

“Nephrology practice settings are unique in healthcare social work,” says Teri Arthur Browne, MSW, LSW, chairperson of the National Kidney Foundation’s Council of Nephrology Social Workers (CNSW), doctoral fellow and healthcare social work instructor at the School of Social Service at the University of Chicago, and part-time dialysis social worker for Fresenius Medical Care, a large outpatient dialysis services provider. Browne, who has 11 years experience as a nephrology social worker, recently edited the Handbook of Health Social Work and authored its chapter on nephrology social work. Since a 1972 government ruling, ESRD is the only disease category and practice setting where Medicare mandates that every treatment center have a master’s degree level social worker on staff in every dialysis center and kidney transplant program. “Based on a diagnosis of ESRD alone, patients automatically qualify for Medicare,” says Browne.

Why the Medicare mandate for a social worker? Patients with ESRD often have additional comorbidities, such as diabetes or heart disease, as well as mental health conditions such as depression and anxiety. “Patients are not only coping with ESRD but also with the ramifications of comorbidities,” says Browne. Patients with ESRD need social workers because there are numerous adjustment issues and psychosocial barriers associated with having to deal with serious chronic illness, its complications and comorbidities, and its extensive treatment regime.

Because patients with ESRD require such extensive, long-term care for their chronic illness, a multidisciplinary healthcare team provides all facets of patient care—including medical, dietary, mental health, and financial needs. “The social worker is one of the members of the clinical team along with a registered dietitian, nurses, and physicians,” Browne explains. The clinical team meets regularly and frequently in case management meetings to discuss any issues—medical or otherwise—that may affect a patient’s care.

A nephrologist—informally referred to as a “kidney doctor”—oversees all medical care related to dialysis and transplantation. Nephrology nurses coordinate direct patient care and often train patients to perform home hemodialysis and peritoneal dialysis. Along with the nephrologist, nephrology nurses supervise renal technologists and patient care technicians, who administer dialysis treatments, monitor patients during dialysis, and maintain dialysis equipment. A registered dietitian, also mandated by Medicare, provides nutritional counseling and dietary planning for patients with ESRD who usually must follow certain dietary restrictions during dialysis and following transplantation. A financial counselor may also be on staff to assist patients with billing, insurance coverage, and other financial issues. For patients who are candidates for transplant, additional team members include the transplant surgeon, the transplant coordinator (usually a nurse), and the donor coordinator.

Each of these clinical team members has a relatively specific role in the patient’s care. The role of the nephrology social worker, however, is much more all-encompassing because the social worker must often become involved in all aspects of patient care and interact with all other clinical team members to advocate for the patient. In her chapter on nephrology social work, Browne notes that in some studies published in the 1990s, a majority of patients surveyed ranked social workers as more helpful and more important to them in providing information about treatment choices than nephrologists and nurses.

“Much of our work is about empowering the patient—to help them make informed decisions about the quality of their life and their goals for the future, and how their treatment options fit into that life,” notes Surveen Klein, LCSW, MPH, BACS, lead transplant social work supervisor at Ochsner Multi-Organ Transplant Center in New Orleans. Klein worked as a dialysis social worker for three years with Fresenius Medical Care and has worked at Ochsner for six years. In her current position, Klein supervises all transplant (heart, liver, kidney, pancreas, lung) social workers at Ochsner and carries a full caseload of pretransplant, transplant, and posttransplant patients with ESRD.

From Dialysis to Transplant — The Patient Continuum of Care and the Social Worker’s Role
Many patients with ESRD progress along a continuum of care, from long-term dialysis to transplant and perhaps back again, as their disease worsens or recurs, or as a donor kidney becomes available. “ESRD is not necessarily immediately life-threatening. Patients may be able to go to dialysis for several years before requiring a transplant,” Klein says. “There are a lot of challenges within the dialysis community to help our patients recognize what their treatment options are, and for the doctors to determine what the best treatment option is for a particular patient.”

One distinctive characteristic of the nephrology social worker’s career is the ability to develop long-term relationships with patients over the course of their chronic illness and treatment. “One of the things I’ve loved about working in transplant services is that I get to see where patients go when they leave the dialysis center, what happens in their lives, and how they are doing 20 years after transplant,” Klein says. “It’s very rewarding and fulfilling to see how the quality of their lives changes from when they came in for their very first dialysis treatment. I’ve seen patients get married, have children, and enjoy their retirement.” Browne reiterates, “Nephrology social workers relish working with their patients for years.”

Charlie Thomas, LCSW, ACSW, a social worker for Banner Good Samaritan Medical Center Transplant Services in Phoenix, has 21 years of experience in the ESRD and transplant field. He also serves on the editorial advisory board for Nephrology News & Issues. He relates the story of a patient he has known for almost his entire career. “In 1985, while working in the hospital’s dialysis unit, I met a nervous young woman who was starting dialysis for inherited polycystic kidney disease. She knew that other family members had died from this disease,” he says. After a year on dialysis, she was referred for kidney transplant evaluation and he again met with her. After receiving her first kidney transplant, she resumed community charity and church activities. “Five years later, I worked with her again when she required another kidney transplant,” Thomas says. She had begun studying to become a social worker. While in graduate school for her MSW degree, she had a disease recurrence and needed a combined kidney/liver transplant. Thomas says she persevered after that transplant and went on to finish her MSW degree. “Now, she’s working full time with kidney patients at a local Phoenix health association,” he says.

From the first dialysis visit to years after transplant, the nephrology social worker fills a vital role in patient care, from initial assessment and education to crisis intervention and counseling, according to Browne. For new dialysis patients, the social worker performs a complete psychosocial assessment. “We’re specifically looking to identify potential psychosocial barriers to maintaining the ESRD treatment regime,” she says. For example, patients who work full time may have difficulties getting to the dialysis center three times per week. Or, some patients may have fears and anxiety about the dialysis process that causes them to miss treatments. For such patients, the social worker can help overcome these barriers. “We can help patients figure out how to remain employed throughout treatment, and we can communicate the severity of the complications of missing dialysis treatments,” Browne explains. “We can even help ESRD patients with basic lifestyle needs, such as housing, transportation, medication access problems, and home care or community services, like Meals on Wheels.”

A typical day for a nephrology social worker in the dialysis unit may involve working with a new patient and their family in coping with the ESRD diagnosis, meeting with predialysis patients, working with other patients and the financial coordinator on Medicare and financial issues, helping another patient find transportation to dialysis or arrange for dialysis services while on vacation, and mediating any staff/patient conflicts.

A crucial part of treatment compliance and success for patients with ESRD is a family support system. The nephrology social worker can counsel and educate patients and their families to help alleviate any barriers to support. Patients with a strong support system may be candidates for home hemodialysis. “We help the clinical team determine good candidates for home dialysis by assessing family and home support,” Browne says. “Patients who perform home hemodialysis or peritoneal dialysis receive intensive training from clinical staff on the front end, so the social worker is in a consultative role in these cases.” Once monthly, when patients come to the dialysis treatment center for lab work and to meet with clinical team members, the social worker will meet with the patient to discuss any psychosocial or lifestyle issues that might affect their home treatment regime.

Psychiatric Issues
The need for substantial lifestyle changes and the constraints on daily life, even for home dialysis patients, can lead to depression. “Depression is very prevalent in ESRD patients, and it has been directly linked to increased morbidity and mortality,” Browne says. The initial psychosocial assessment can help identify patients who may be prone to developing depression, but ongoing monitoring for mental health issues is necessary for patients with ESRD. For patients needing mental health interventions, the nephrology social worker can help coordinate such services at the dialysis treatment center. Browne explains that anecdotal reports and research studies indicate that patients with ESRD prefer not to be referred out for mental health interventions. “Dialysis patients appreciate and want their social workers to intervene so they can avoid going somewhere else for mental health interventions,” she notes. “We can help them obtain support and counseling for depression before, during, or after their dialysis appointment.”

Psychiatric status is an important consideration if the dialysis patient is to become a candidate for a kidney transplant. One goal of the Healthy People 2010 effort is to increase the number of dialysis patients who receive kidney transplants, says Browne.

Thomas explains, “It is important for transplant patients to be psychiatrically stable because some of the medications they take can actually induce mood swings. We must know if a patient has a serious mental illness, such as bipolar disorder, since these antirejection medications can provoke manic episodes, even in previously stable patients.” Patients with a psychiatric history must be stable before transplantation.

“We also assess, monitor, and intervene for alcohol and substance abuse. Any patient with alcohol or substance abuse issues is required to go through rehabilitation prior to transplant,” Thomas emphasizes. An important part of the transplant social worker’s job is to conduct a thorough pretransplant evaluation. “As with dialysis, every patient must receive a psychosocial evaluation conducted by a master’s level social worker,” Thomas says. The evaluation assesses support, behaviors (skipping dialysis, smoking, drinking), psychiatric history and status, disabilities, and other factors that may potentially adversely affect the success of the transplant. “We look for any issues that we can help the patient resolve, especially if it will make them a better transplant candidate,” says Klein.

According to Thomas, there are often practical behavioral treatment compliance problems—such as skipping dialysis treatments or not taking medications—that must be resolved before a patient can be approved for a transplant waiting list. “In this situation, we would work with the patient to address these compliance issues because they have to become more adherent in order to be placed on the transplant waiting list. Patients must demonstrate behaviors that indicate to the clinical team that they will take their medications, have regular lab work, and they will be fully involved in their care,” Thomas explains. To address these issues, the social worker may introduce contracting around adherence and to stop destructive behaviors, such as alcohol consumption. “We help them become a full participant in their medical care before they have the transplant,” Thomas says. “Transplants do not last very long otherwise. We have an obligation to organ donors, and to other patients on the waiting list, to give the kidney to a patient who will take care of it.”

Education and Social Support
As with dialysis, other essential factors for transplant success are education and family support. “It is the nephrology social worker’s job to help educate patients and their families about kidney transplantation and its ramifications,” she says. Undergoing major surgery and having to commit to an intensive antirejection medication regimen can cause hesitation and fears for many patients. The transplant social worker can counsel patients to talk about any fears with their family and with clinical staff, to examine the pros and cons of undergoing a transplant. “We help them get the information they need and connect them with resources like the National Kidney Foundation,” says Klein. With regard to family support, Klein says the bare minimum required is an adequate caregiver and a backup to be with them during recovery and provide transportation. Immediately following surgery, transplant patients may have to come in for monitoring as frequently as once or twice daily. “It’s very important, especially in transplantation, that there be a support person or support system to help after the patient’s transplant,” Thomas echoes.

Rookies and Veterans
Thomas further notes that on any given day, nephrology social workers may interact with two different types of transplant patients, each of which requires a different type of care and interaction style from the social worker. “There are patients who have been ill for a very long time and patients who have just recently been diagnosed,” he says. For those who have dealt with their chronic illness for years, there are more issues associated with dependence on others, lifestyle changes, and feelings of hopelessness, Thomas has observed. In contrast, patients just recently diagnosed do not view themselves as chronically ill and want to resume their lifestyle quickly, he says. At Banner, social workers may get assistance in helping new ESRD patients adjust to their disease from patients themselves. “We have developed a mentor program where we train patients who have been transplanted to be mentors for other patients,” Thomas says. “It adds a patient self-help aspect to our transplant program.”

Posttransplant Support
For patients undergoing living donor transplantation, the social worker also works with the organ donor to provide assessment and counseling services. According to Thomas, the living donor may need posttransplant counseling when the organ recipient does not respond well to the transplant. “Oftentimes, donors can develop feelings of guilt, frustration, anger, and/or depression if the transplant is not successful. They may feel that it is their fault, that their kidney is the reason the transplant failed,” Thomas explains. “We facilitate communication and support for living donors, as well as for the patient receiving their kidney.”

Posttransplant emotional issues also arise for the patient when the transplant is not as successful as hoped. “The emotional response posttransplant is often intense,” says Klein. Posttransplant emotions run the gamut from elation to depression, anxiety, and fear. “There is uncertainty about whether the kidney will work, whether their life is going to change,” Klein says. “I always tell patients that a transplant is never a guarantee. It is also not a cure.” Still, some patients have higher expectations following transplant. “Sometimes, we have to help the patient deal with having to undergo dialysis after transplant, when their hope following transplantation had been to eliminate the need for dialysis,” she says. “The transplant team as a whole deals with medical and other issues to help patients through their recovery process. The transplant social worker can help them deal with the emotional ‘bumps in the road’ that come up so they can focus on the recovery process.”

Another “bump in the road” for posttransplant patients involves the extensive medication regimen and associated costs—thousands of dollars each year. “We have a lot of patients who have difficulties paying for their medications,” says Thomas. These medications are critical to the success of the transplant to prevent organ rejection. “Medicare pays for some, insurance may pay for others, but there is a national trend toward less coverage for medications,” he adds. Thomas and his colleagues have advocated with the state legislature for funding.

Medication and psychosocial issues continue long after the transplant surgery itself, and as with long-term dialysis patients, posttransplant patients require the services of a dedicated social worker. “Transplantation is a lifetime treatment option,” says Klein. Even 10 years after transplant, patients still have concerns about access to medications, lifestyle adjustments, and psychosocial issues. “Posttransplant patients have a social worker for the life of their kidney,” Klein notes.

Entering the Nephrology Social Work Field
Nephrology social workers find the field challenging but rewarding. How can a new social worker prepare to enter this field? According to Browne, candidates for nephrology social work should have a desire to work in a chronic disease setting. “Someone who thrives on short-term, acute situations may not enjoy this type of work,” she advises. Important qualities for a nephrology social worker include the ability to work independently and to be self-directed, since there may be only one social worker per facility, says Browne. “Previous renal disease experience is not really necessary,” she notes.

Klein says, “I had no prior experience in nephrology, but what I did have was experience with a chronic disease background, working with HIV-positive, AIDS, and the diabetic populations.” Thomas says, “Aside from an MSW degree, many facilities look for previous experience in medical social work. If someone wanted to be a transplant social worker, experience working in hospitals, home health, and other medical settings would be helpful.”

Since coursework specific to nephrology social work are not usually available in most programs, Browne, Klein, and Thomas recommend accessing professional organizations and journals to learn about the field. “Nephrology social workers have a very large and active professional organization—the Council of Nephrology Social Workers,” says Browne. The CNSW supports and promotes the nephrology social work profession, develops educational resources for social workers and patients, and monitors and participates in regulatory and legislative issues. Resources and publications for members are available on its Web site. “Since this is a specialized field, the CNSW has a tremendous array of professional education tools, such as an annual all-day intensive new worker training,” Browne adds.

Thomas advises interested social workers to attend conferences and national meetings, read professional journals, and meet nephrology social workers in the field. For those interested in transplant social work, the Society of Transplant Social Workers is also a helpful professional organization, he says.

Klein, who recently lectured on nephrology social work at her alma mater, Tulane University, says her lecture was surprisingly well-attended and there was a high level of interest from social work students. “Medical social work is covered in college, graduate, and postgraduate programs, but the specifics on nephrology social work are not,” she notes. Visiting nephrology social work Web sites and finding an experienced nephrology social worker to mentor with is valuable, Klein says. “Our jobs are very well-rounded. We deal with all aspects of patient care, and work with a multidisciplinary clinical team. Those considering this field need to know that it’s not just about sitting in a dialysis unit.”

— Jennifer Sisk, MA, is a suburban Philadelphia-based freelance writer with 15 years of experience as a writer and a research analyst in the healthcare field. She has written on depression, attention-deficit/hyperactivity disorder, schizophrenia, mental wellness, and aging.

End-Stage Renal Disease (ESRD) Facts and Figures
ESRD is the complete or almost complete functional failure of the kidneys. The disease may develop suddenly or as a progression from chronic renal failure, depending on the underlying cause. Diabetes and hypertension are the primary causes of chronic ESRD. Lupus, cancer, substance abuse, and other kidney diseases (glomerulonephritis, polycystic kidney disease) can also cause ESRD. Without treatment, ESRD is a fatal disease.

ESRD is treated with hemodialysis, peritoneal dialysis, or kidney transplantation. Hemodialysis has traditionally been administered at hospitals or outpatient dialysis clinics, but home hemodialysis is increasing. During hemodialysis, patients are connected to a dialysis system via an external catheter or permanent vascular fistula graft to remove waste, salt, and extra fluids that build up in the body and to cleanse the blood of high levels of potassium and sodium. Each hemodialysis treatment lasts at least three to four hours, and weekly multiple treatments are generally required.

Peritoneal dialysis is performed by the patient at home, via a surgically implanted abdominal catheter. The patient inserts dialysate fluid through the catheter multiple times daily to filter the blood and attract excess fluid and then drains the fluid out via the catheter. Alternatively, a machine called a cycler can be used to exchange fluids overnight while the patient sleeps. Patients performing peritoneal dialysis must visit a clinic monthly for lab work and consultation.

Kidney transplantation is a treatment option for patients healthy enough to undergo surgery and able to comply with an extensive medication regimen and follow-up monitoring. ESRD patients may be placed on a transplant waiting list to receive a donated organ from a deceased individual or from a living donor, usually a close relative.

Currently, approximately 500,000 American patients have ESRD; approximately 70% of those patients are being treated with long-term dialysis and 30% have had kidney transplantation. The U.S. Renal Data System projects that by 2030, the number of ESRD patients will exceed 2.2 million. Increases in ESRD may be linked to the increased prevalence of diabetes, hypertension, and chronic kidney disease in the American population. The American Diabetes Association estimates that 18 million Americans have diabetes, and the American Heart Association estimates that 65 million Americans have hypertension. The National Kidney Foundation estimates that 20 million Americans have chronic kidney disease, and 20 million more are at increased risk of developing the disease.

— JS

Resources
Browne, T. A. Nephrology Social Work. In: Gehlert, S., & Browne T. A., eds. (2006). Handbook of Health Social Work. John Wiley & Sons, Inc.; pages 471-506.

Council of Nephrology Social Workers, www.kidney.org/professionals/CNSW/index.cfm

Society for Transplant Social Workers, www.transplantsocialworker.org/index.cfm