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By: Devon Rocha, MSW, LSW
Mr. Jones arrives at the same time every Monday, Wednesday, and Friday, at 8:30 a.m. sharp. He nods good morning to the same familiar faces, exchanging words about the weather and the price of gas. He gets himself a cup of coffee before taking his seat, where he will be stationed for the next four hours. He has been doing this routine for the past two years, and will continue to do so for the rest of his life. At 68 years old, he has a lifetime of hard work behind him and was able to retire.
Yet, during his “golden” years when he would like to be traveling, taking care of his grandchildren, and working in his garden, a substantial portion of his week is tied up for him to receive life-sustaining kidney dialysis treatments. He is almost literally tied up during this time, too, with one arm wrapped in a blood pressure cuff and the other arm stuck with needles to accommodate the cycling of blood in and out of his body, getting cleaned. Mr. Jones must attend his treatments regularly like this because his kidneys do not work as they should. This leaves fluid and toxins in his body that need to be removed, or he will die.
Nephrology (dialysis) social work is within the realm of medical social work but is very unique. The patients vary in age and degree of physical health, come from diverse backgrounds, and have a vast array of need. The work in this setting is both highly rewarding and very challenging.
There are several treatment options for kidney failure, or end stage renal disease. Patients can try to receive a kidney transplant, they can do dialysis at home, or they can go to a clinic for dialysis treatments. I work for a clinic where people come in to receive their dialysis treatments, like Mr. Jones in the above example. The dialysis population I work with encompasses an age range of 29-93, with the majority of these patients in their 50s to 60s. The independently owned clinic where I work is located on the west side of Chicago. The majority of dialysis clinics are owned by one of a few large corporate chains. Our census typically hovers around 85 patients at any given time. It changes with new admissions, the occasional (and very sad) patient death, the even less frequent occurrence of a patient receiving a kidney transplant, and the sometimes extended hospitalization that leads to discharge from the patient schedule.
Per Medicare regulations, every dialysis clinic is required to have a licensed, master’s level social worker on staff as part of an interdisciplinary team. The other team members are the doctor, nurse, dietician, patient care technician, and the patient. Each person brings to the table a unique perspective to help ensure that the patient receives proper care. This is helpful because there is always someone to consult with if a concern comes up about a patient. For example, a patient presenting with depressive symptoms such as poor appetite, insomnia, and lethargy could also indicate a problem with uremia, which is a buildup of toxins in the body. This can happen when the patient does not get “enough” dialysis. The nurse, doctor, dietician, and social worker each contribute from their own foundation of knowledge to the care of the patient, creating a very holistic approach to treatment. The patient, in turn, feeds back to everyone how he or she feels, if there are any concerns about his or her healthcare, and if there are any difficulties in reaching treatment goals.
This team approach starts by undertaking a comprehensive interdisciplinary assessment and developing a plan of care upon the patient’s admission to the clinic. The psychosocial portion of this assessment is extensive and covers the planning of healthcare advance directives; taking a mental health history; exploring the available support system; and discussing interests, hobbies, or vocational goals.
I get to do a lot of one-on-one supportive counseling regarding various issues, from managing feelings of depression regarding chronic illness to adjusting to life role changes. However, the majority of my time is actually spent on very “practical” assistance, like completing and following up referrals for community resources such as in-home services, assisting patients with insurance problems or issues, and identifying affordable housing resources.
There are many advantages to social work in this setting. One of these is getting to work with a consistent client base for potentially several years. Since I work full time at one dialysis unit, I get to see everyone a couple of times each week. This is especially helpful if or when a patient is experiencing a particularly difficult time. It gives a nice opportunity to at least “check in” on how the patient is doing, instead of having to wait a full week in a typical counseling/therapeutic relationship. There can also be a real opportunity for collaboration with the patient’s outside support system. A teamwork approach involving the patient’s loved ones can be very effective for difficulties such as medication management, nutrition, or adherence to the treatment regimen.
It is also rewarding to be there with a person who is undergoing such a significant life change, as when a person is newly diagnosed with end stage renal disease and needs to start dialysis. Some patients have never even known they were at risk for kidney failure. Then all of a sudden, they must deal with this new self image as someone who is “sick.” This can be very anxiety-provoking, with so many new terms, routines, and new people involved. There is often a great sense of loss and always there is a huge lifestyle change. Additionally, there are insurance and benefits issues when it comes to the chronic phase of any form of medical care, which is very confusing. Thus, I play a role in offering emotional support and assistance through the complex maze of Social Security benefits. This is also a big challenge to this job. Prior to working in the dialysis setting, I did not have any experience with Medicare or Social Security entitlement/benefits. Now, if there is a problem with insurance, this problem comes to me. Additionally, if a person is unable to work and collects only a small disability benefit from Social Security, that person may be entitled to assistance from the local Department of Human Services (“food stamps,” medical coverage, and so forth). This is also a complex, bureaucratic process that demands advocacy and often education about one’s rights.
Another big challenge to this work is assisting patients to obtain reliable transportation to and from treatment three times per week. Many of the patients I work with do not own cars, or if they do, it can be risky to drive home after treatment, as weakness can occur. Public transportation is not always a good option, either, for the same reason. Fortunately for the patients I work with who have Illinois Medicaid, there is coverage for transportation to dialysis. There are a plethora of transportation companies who operate in a large metropolitan area like Chicago, but for dialysis units in more rural settings, this can be a significant problem.
While it is rewarding to offer psychosocial support on a consistent basis and get to know the patients very well on account of the amount of time they spend at the dialysis unit each week, this translates to monitoring a variety of issues for the approximately 85 people who comprise my caseload. This includes remembering who is experiencing emotional problems at any given time, tracking who needs housing resources, who needs assistance in applying for benefits and the follow-through for that, who needs dialysis arranged out of town to attend a family reunion next month, and the aforementioned intensive support to a patient who is new to dialysis. Additionally, there is a new requirement in dialysis units to conduct a standardized assessment of quality of life, which must be completed on at least an annual basis. Although I am very busy, I actually consider myself lucky to have this number of patients, because caseloads at different dialysis units can be much higher, and social workers often must travel between two or more units. This is a lot of people to keep track of!
This is also a population in which client death can be a frequent occurrence. People can live on dialysis for years and years if they keep up with treatments and their overall health maintenance. However, many of the common co-morbid medical conditions (hypertension, diabetes, congestive heart failure) offer their own, sometimes life-threatening, complications if not carefully managed. The death of a patient can have an impact on the whole unit. To the other patients, this can equate to the loss of a friend or maybe simply one of many familiar faces that have become part of their routine. It can also serve as a reminder of a patient’s own mortality. It has an impact on the staff, as well, who have contributed to the person’s care and have gotten to know him or her.
Chronic illness of any kind is a tough burden on patients and their families. As with most social work jobs, no two days are the same, and it is very important work.
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Devon Rocha earned her Master of Social Work degree from Loyola University Chicago and her B.S. in psychology from the University of Illinois. She has been working as a dialysis social worker for three years in Chicago.
This article appeared in the Summer 2010 issue of THE NEW SOCIAL WORKER (Vol. 17, No. 3).