Home Dialysis & The Nephrology Social Worker
From 1978 to 1996, I worked in three dialysis clinics: all had in-center and home dialysis patients; two had home HD as well as PD. My first social work job was at the University of Kansas Medical Center, where inpatients and outpatients were treated through all stages of kidney disease from first diagnosis to dialysis, transplant and afterwards. About 40% of our 76 outpatients did PD or home HD. Home patients were of all ages, all education levels, and from well off to living on limited incomes. Most lived in houses or apartments and a few in trailers. Some lived nearby and others were hours away. Our medical director was open to training anyone for home dialysis. I learned a lot from the those I worked with—physicians, staff, patients and families.
I loved that I could take the time to get to know my patients. I saw most in-center patients every week, in-center and home patients in the hospital, and CKD, home dialysis and transplant patients when they came to clinic to see their doctors and nurses. I even worked with the medical director and a psychologist on a research project studying factors contributing to successful home dialysis.
I left that job for a company-owned clinic and later for an MD-owned one, and my caseload was larger in both. The MD who owned my last clinic opened a second clinic in an area where kidney disease and poverty were rampant. I found I had less time to help patients with urgent needs. I was juggling problems at one clinic where disease and poverty were rampant. Although I loved working with patients, I left direct practice in the for-profit world to work with nonprofits.
I wanted to find out what had an had not changed since my time in direct practice, so I reached out to social workers on the National Kidney Foundation’s social worker listserv. I received emails and interviewed one social worker by phone. Here’s what I learned.
Sharon L. Smitherman, MSW, LCSW, NSW-C
“I have been working almost exclusively with home dialysis patients for almost 15 years now. The ages of the patients in my caseload range from infants and children to a 91-year old. I have some home HD patients using NxStage. My most recent home HD patient is our first child to do NxStage. My caseload stays about 100 patients, including about 10 children. Most of my pediatric patients are doing PD, but I do have four children on HD. My patients come from several different counties including both rural and urban areas.
One of the biggest challenges for me as a home dialysis social worker is finding resources in all of these different counties. It is also a challenge for me to complete KDQOL surveys, PedsQL surveys and psychosocial assessments for patients whom I may only see once or maybe twice a month. Our in-center HD patients are seen 12 or 13 times a month and their social workers have several opportunities to complete tasks with them. I also have to work harder to establish a relationship with my patient I only see for a few minutes a month. In center HD patients tend to be more local, usually from only one county or part of a county. Our home dialysis department has several nurses but only one dietitian and one social worker, so it is much more difficult for me to take time off or to attend meeting and workshops. My goal is to see every patient every month, but they are often in a hurry to leave so I depend on our nurses to keep me informed. The good news is that most of my home dialysis patients prefer to be independent or they have a caregiver that is committed to them and their needs. Approximately 25 to 30% of my home dialysis patients decide to continue working after starting dialysis which we encourage and support. I am very fortunate to have a financial counselor that I can refer insurance issues to especially for new patients and also for existing patients when needed.
I would advise a social worker new to home dialysis to expect a much faster pace as they will need to be in two places at once most days. They may find themselves chasing a patient down in the parking lot. They should count on doing more phone contacts with a home dialysis patient caseload. Make sure you have established who will cover your patients when you are off.”
Lois Kelley, MSW, LSW, ACSW, NSW-C
“I get a much broader and more accurate picture of who the patient is when I can see them in their home setting. It allows to me understand them better and help them address their needs or desires. I can see family dynamics, pets, and get a better sense of the person who is doing home dialysis, and what they are dealing with day to day.”
Dodie Stein, PhD, MSW, LCSW
“I currently cover two clinics. At one clinic, I cover half the in-center patients and the small number of home patients. I am at that clinic 4-5 days a month. My main clinic is a large home-only clinic with half home HD and half home PD patients. I’m there the other days of the month. For the home clinic, we’ve conducted personal assessments with patients and family members before starting treatment or those on in-center dialysis considering home dialysis. I often see them first to briefly go over options, discuss patients’ goals, concerns, and priorities. The RN follows up with specific show and tell information. Some patients have a doctor who has suggested a type of dialysis. The patient may want something else or the patient’s situation may limit his/her options. I help the patient and team decide if home dialysis is a good plan for each patient.
My most difficult challenge is dealing with the schedules of two clinics, home and in-center patients’ schedules, multiple doctors’ clinics, and various clinic and social work meetings throughout each month. Ideally for home dialysis patients, I try to see patients and partners the first time during their first couple of training sessions to deal with any emotional issues they may have. We train patients to take primary responsibility for home dialysis so partners may only come a few days during the training. A partner may become overwhelmed when they see dialysis for the first time. A social worker can be helpful in that situation.
I do patient assessments, do KDQOL surveys and review results with patients and screen for depression using the PHQ-9. I do clinical interventions to help home patients cope with kidney disease and juggle dialysis, work and a social life. I help patients make changes needed for transplant. I work together with insurance counselors to cover all in-center and home patients who participate in the AKF Health Insurance Premium Payment program and do other financial assistance applications. Because I can’t always see patients at the clinic, I sometimes do assessments and work with patients by phone. On an annual basis, I do education on home modalities with IU School of Medicine nephrology residents and fellows. I’ve completed some clinical research projects on home and in-center patients and would like to do more as time and resources allow.
I love working with home patients because a higher percentage of them work and travel. In my opinion, all of our patients are heroes. It takes a lot of gumption and responsibility to self-manage dialysis, meds and diet. We expect a lot of them. My advice to patients is that if your social worker hasn’t met with you recently and you want to see him/her, tell your home training nurse. Your social worker may be juggling patients in different clinics on different types of dialysis. Your nurse will let your social worker know so he/she can make time for you.”
I learned that social workers working with home patients still juggle tasks and time. That said, those I heard from found it rewarding to help patients overcome their many challenges and achieve their goals.