In June 2013, Nephrology News & Issues began Kidney Care 101, a series for health care professionals entering the renal industry. Whether you are an administrator, social worker, nurse, dietitian, technician, or nephrologist, these articles will help you get comfortable with how things come together in a dialysis unit or a transplant center. This installment, the last in our series, covers the role of the social worker on the dialysis and transplant team. You can find all the articles in our Kidney Care 101 series at NephrologyNews.com/101.
Nephrology social work (NSW) is an exciting and constantly advancing field. The epidemic of end-stage renal disease has stimulated the growth of this social work specialization. The nephrology social worker is constantly designing new and efficient ways to address the many psychosocial challenges of this chronically ill patient population. Primarily, the nephrology social worker must help patients and family members adjust to the diagnosis of ESRD, promote rehabilitation services that maximize quality of life, and help patients manage the multiple daily demands of treatment and self-care.
NSW interventions that help patients and families adjust to the diagnosis of ESRD is primary, since achieving that goal helps the patient reach the additional goals identified above. The National Kidney Foundation (NKF) Council of Nephrology Social Workers (CNSW) supports training in the strategic, outcomes-driven model of practice, where new social workers can understand adjustment to ESRD through a three-phase model (see the Resources article at the end of this Kidney Care 101 section). This model forms a platform from which social workers can serve the newly diagnosed ESRD patient, the patient in the chronic phase of the illness, and the patient in the palliative or end-of-life phase. Each of these stages of ESRD presents unique challenges to a patient and opportunities for social work intervention.
Phase I: Diagnosis and initiation of renal replacement therapy
The patient receives focused nephrology social work interventions that stabilize disorientation and disruption of life after the diagnosis of ESRD. Navigating patients and their families through life changes and directing them to the resources they will need is an important early role for the social worker. Social workers are called to address common myths and fears related to life with ESRD and instill a sense of hope that life can get easier after this first period of treatment. Early on, while social workers help patients face the necessary losses associated with the diagnosis of ESRD, they also help plant the seeds of hope for rehabilitation.
In Phase I, NSWs encourage patients to examine treatment options that are most suited to their lifestyles. They coach patients to avoid making big decisions and life changes that might be unnecessary when things stabilize, such as stopping employment. NSWs partner early on with each patient and their family to minimize the burden of the disease. They position loved ones into helpful roles that allow for returning independence of the patient. The teaching, counseling, and coaching roles of the nephrology social worker during this stage can set the stage for a positive, long-term adjustment to ESRD.
Phase II: Chronic, fluctuating illness
Once a patient has medically and emotionally stabilized, they move into this phase, and nephrology social work interventions focus more actively on rehabilitation. The patient is guided by the social worker to look back and then forward to adapt life activities and goals to continue the best quality of life. NSW rehabilitation interventions often target the patient’s relationship to work and family. They also focus on their physical and social world. Coaching and counseling interventions are aimed at giving patients the necessary tools to live well with ESRD. Tools and skills to manage the ups and downs of renal failure and its treatment are key, because of the fluctuations that can occur with the disease. If a patient can develop the skills to stay active on the good days, and tolerate the challenging ones, they are positioned for a more robust quality of life. The family often participates in the social worker’s education and rehabilitation efforts in this phase. A strong and resilient family system can promote patient quality of life and support the patient in following their prescribed treatment plan. The goal of this phase is to help a patient to return, as close as possible, to their “old self again.” They often best do this by returning as much as possible to the world they know and love. The goal is the same for the family system.
Phase III: Palliative care
Following a sometimes long and fluctuating course of treatment that may include in-center and home dialysis as well as kidney transplantation, a patient may begin to experience the decline associated with long-term renal failure. Cardiovascular disease, diabetes, muscle atrophy, bone deterioration, and other co-morbidities associated with kidney disease may progress, as does age alone. Patients may experience increased episodes of frailty and longer periods of recovery between dialysis treatments. Hospitalizations often become more frequent, further contributing to decline. As they enter this palliative care stage, a percentage of patients choose to stop treatment rather than further their course of decline. Many patients, despite the increasing frailty, choose to continue treatment until death. These patients and their families benefit from social work oversight to promote a positive palliative care and end of life experience. The role of the NSW in this phase is to facilitate active decision making and support patient choice. They also support the patient’s desired level of independence, and work with the interdisciplinary team to help the patient and family adjust to giving and receiving care. Helping the patient and family achieve a state of open communication and intimacy during this phase is another key focus of the NSW.
It is important to note that some patients are diagnosed with ESRD when they are already in a state of medical decline. It is often difficult for patients and families to decide against dialysis suddenly and prepare for an immediate death in the hospital. Consequently, some patients enter the treatment center for the first time in Phase III. NSWs are called forward in these situations to both welcome a patient into a new world of treatment while subsequently helping them begin a palliative course of care. Helping the patient and family learn to adjust to the multiple medical orders while approaching the end of their lives can be challenging. NSWs help navigate them through the new demands while listening for their end-of-life needs.
Social workers find themselves helping not only patients but also the treatment team adjust to the emotional demands of the ESRD treatment. The interdisciplinary team serves all different stages of patient need, both physically and emotionally. For any three given patients in a dialysis center, the team could feel like part of a post trauma team for the newly diagnosed, part of a coaching team for a chronic patient, and part of a hospice team for a patient with multiple comorbidities who is in declining health. Social workers offer their skills to the team to assist them in recognizing the important roles they play in each patient’s life. This allows the team to achieve emotional balance in the workplace and avoid burnout. They also help train the team to manage difficult patients and deal with the loss of up to 20% of their patients each year.
Learning about case management
As social workers dance in and out of their work with patients, families, and team members during these phases of adjustment to kidney failure, they must also exercise strong case management roles. They must learn to triage their time to their patient population based on need. The days of a Nephrology SW, like those of most SWs are filled with things undone. The new NSW will benefit from learning macro and mezzo models of delivering care as soon as possible, in order to reach more patients with the tools and support they need in timely ways. Community resource referral is a key role for the nephrology social worker. In addition to referral, NSWs must help patients and families understand how to utilize those resources and navigate them independently. This can prevent patient over-dependency on the NSW who has limited time, and improve patient rehabilitation. It is crucial that social workers stay tightly connected to the community and its resources in order to serve these case management needs of their patients. Working alongside their peers, often through local NKF CNSW meetings, social workers can stay abreast of available resources and best practices in serving their kidney failure patients.
For those entering the world of NSW, it is often said that one grows and advances their skills in layers. Starting with targeted assessment and treatment planning skills, one specializes further into working with the unique problems that present in the kidney failure population. Depression, anxiety, patient-team conflict, non-adherence, adjustment to amputation, substance use, HIV, sleep dysfunction, sexual dysfunction, and marital/family stress are some of the areas the NSW focuses on to expand skill sets. The Dialysis Outcomes Practice Pattern Studies demonstrate how many of these ESRD psychosocial challenges can increase hospitalization and mortality. Monthly QAI meetings encourage the NSW to use a continuous quality improvement model (CQI) to improve care to patients in these and other areas, alongside the interdisciplinary team. Continuing education in these areas, along with peer support is crucial for the new NSW to become their best in delivering interventions to improve patient wellness and survival.
A rewarding field
Once a social worker begins to master the art of serving this brave and grateful population of patients and their families, they will see that they have stumbled across one of the most rewarding careers possible for their field. To all social workers who are new to nephrology, you have a very exciting professional career ahead.