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August 7, 2006
For patients managing the multiple comorbidities of kidney disease, including depression and anxiety, a social worker can be a valuable resource on their road to recovery. For a nephrology social worker, a typical day is busy and varied, ripe with the 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). “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, doctoral fellow and healthcare social work instructor at the School of Social Service Administration 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 of 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—or “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. Continuum of Care 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.” 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 one 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 cause 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 his/her 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 may affect their home treatment regime. Psychiatric Issues 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 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 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 “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 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 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 potential pitfall 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 transplant’s success 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.
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 United States 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 roughly 21 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
Council of Nephrology Social Workers of the National Kidney Foundation, www.kidney.org/professionals/CNSW/index.cfm The Society for Transplant Social Workers, www.transplantsocialworker.org/index.cfm
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