Chronic illnesses.
Assignment Instructions: SOCW6205WK8DISC1
To prepare:
• Review the Learning Resources on social work with clients with chronic illnesses.
• Review the case study on Jesus, a patient with end-stage renal disease who is featured in Chapter 17 of your textbook.
ASSIGNMENT
SUBMIT 1-PAGE IN WHICH YOU:
Post a brief description of the psychosocial effects of end-stage renal disease on Jesus. Analyze the challenges and barriers to care that Jesus and his family experienced as they sought to manage his illness. Describe two strategies the medical social worker used to support Jesus and explain how those impacted his health and well-being. Describe two ethical tensions evident in Jesus’s case and explain how a medical social worker could address them.
RESOURCES
• McCoyd, J. L. M., & Kerson, T. S., (Eds.). (2023).?Social work in health settings: Practice in context?(5th ed.). Routledge.
o Chapter 17, “Competing Interests: Upholding Social Work Ethics in the For-Profit Dialysis Setting” (pp. 260–275)
• Senteio, C. R., & Callahan, M. B. (2020). Supporting quality care for ESRD patients: The social worker can help address barriers to advance care planningLinks to an external site.. BMC Nephrology, 21, 55. https://doi.org/10.1186/s12882-020-01720-0
• Varghese, S. A. (2018). Social support: An important factor for treatment adherence and health-related quality of life of patients with end-stage renal diseaseLinks to an external site.. Journal of Social Service Research, 44(1), 1–18. https://doi.org/10.1080/01488376.2017.1374315
• van der Borg, W. E., Verdonk, P., de Jong-Camerik, J., & Abma, T. A. (2021). How to relate to dialysis patients’ fatigue—perspectives of dialysis nurses and renal health professionals: A qualitative studyLinks to an external site.. International Journal of Nursing Studies, 117, 103884. https://doi.org/10.1016/j.ijnurstu.2021.103884
Jesus Flores (a pseudonym) is a married, 60-year-old Mexican man, who has been living and working in the US for 15 years, although he has never attained legal status. He and his wife, Marta, also undocumented, have a 14-year-old daughter, Araceli, who was born here and lives with them; Jesus also has a teenage son in Mexico, from an earlier relationship. Jesus and Marta both work outside the home and support themselves as well as send back remittances and they rely upon friends to help with Araceli. They have no family nearby. Jesus attended school until age 14 and then began working to help support his mother and three younger siblings. He can read, write, and speak in Spanish but knows little English. Jesus is a devout Catholic who prays at home and attends church every Sunday. He has a history of HTN and type 2 DM. He denies any history of mental health issues. He was not aware that he had CKD. When I first met Jesus in 2019, he had just been hospitalized for a week, during which time he learned he had kidney failure, that he would require dialysis for the rest of his life, and he was told to come to our facility upon discharge to begin his treatment. Jesus was polite but quiet during our initial assessment; he thoughtfully answered all our team’s questions but did not volunteer information unless asked directly. When asked about his family’s medical history, he replied that his mother had died at age 60 from a “heart attack” but he was unsure if anyone had ever had “kidney problems.”
Jesus had been working at a wholesale bakery for over a decade at the time of his hospitalization and his employer granted him only two weeks’ unpaid leave. Without access to FMLA (Family and Medical Leave Act) protection or disability income, Jesus was eager to get back to work quickly. He indicated that he understood the Spanish-language ESRD educational video he was shown and that he would be expected to come to treatment three times per week, four hours per treatment, to survive. I explained that if he missed just one treatment, he was 40% more likely to be hospitalized again, and twice as likely to die. He replied that he would not miss treatment because he could not afford to miss work for so long again. He suddenly added, “If I come to all the treatments, will my kidneys get better?” I explained that once a person has ESRD, it is unlikely their kidneys will recover, but that he could ask his physician (MD) more about this. CMS requires MDs to round at least once a month. Although I knew the MD would affirm this, I also knew it might take several conversations for Jesus to fully acknowledge the finality of his diagnosis. I explained varied treatment options, including transplant; he said he had not been told about any of these options in the hospital or that he had a choice. I empathized with him, acknowledging that it is hard to process so much information during a hospital stay, especially when one is ill. I promised that I would always educate him about his rights as a patient. After a week, Jesus returned to his usual work schedule, Monday through Friday, 6:00 AM to 2:00 PM. We gave him a 3:00 treatment time to accommodate his work hours. However, within a few weeks he began to miss treatment occasionally and often arrived late, limiting his treatment time. The facility must close nightly at 8:00 PM to allow the disinfecting system to complete its cycle overnight and be ready for the next day. Missed and shortened treatments are less effective, and Jesus’ monthly labs demonstrated this. Additionally, he was struggling with the dietary and fluid restrictions. He was used to eating a traditional Mexican diet, high in phosphorus and potassium, supplemented by free foods from the bakery, and the hot kitchen made him thirsty. Jesus had good commercial insurance from work; he also had high co-pays for the new phosphorus binder medication he needed to take with his meals (three large pills during each meal, and one with snacks) and he often skipped taking them or would take fewer than prescribed to make them last longer.
Jesus was invited to, but did not attend, his initial care plan meeting and the MD, RD, and RN expressed concerns that he was not “meeting adequacy,” meaning he was not well-dialyzed and that his poor adherence to the treatment regimen was certainly the cause. I echoed their concerns but relayed my impression that Jesus felt a strong duty to his family to be a provider, therefore work was of utmost importance to him even when he felt unwell. The high cost of his medication was also addressed. The team decided that the RN would reinforce the importance of Jesus’ attendance at every treatment, the RD would help him make better food and fluid choices, and I would assist him in removing any barriers to coming on time. Jesus told me that he was late because his boss would often add some last-minute task he wanted him to perform, despite his agreement that Jesus could leave at 2:00. Jesus found it hard to say no. He could sometimes get a friend to do it for him, but he worried the boss was becoming increasingly impatient with him. I offered to write his boss a letter explaining why it was so important to his continued health and ability to work that he left on time. Jesus was grateful for the offer but wanted to think about it.
One day, Jesus and Marta arrived early for treatment; he told me that he had been laid off without warning, that his boss told him he “just wasn’t needed anymore.” Marta was angry and felt sure it was discrimination. I empathized with her, but also knew that New York is an “at will” state meaning employers hire and fire “at will.” Without legal status, it might be risky for Jesus to pursue legal action. I referred them to a local immigrants’ rights organization and spent some time helping them process their feelings. I also connected them to our insurance counselor (IC) so that she could help them with relevant concerns. Jesus might be offered COBRA (Consolidated Omnibus Budget Reconciliation Act) coverage by his former employer and could then maintain his insurance. Commercial insurance typically reimburses ICHD at a much higher rate than Medicare/Medicaid, and our company leadership expects me to work with the IC to help patients keep their coverage. COBRA is often prohibitively expensive (i.e., the person must pay the entire monthly premium on their own, without employer contribution), but there is a charitable organization that provides grants to eligible dialysis patients to cover those costs. It is considered a “win-win” situation; the patient keeps their insurance and preferred providers, and the facility gets paid more.
Jesus consistently attended his dialysis treatment and his adequacy improved. However, without income, he struggled to pay for binder medication. He had increased leg pain, caused by the high phosphorus levels in his blood affecting his bone health. Although he typically used the subway, climbing the steps was becoming a challenge. Jesus was not eligible for regular NY Medicaid transportation, so his only choice was the mass transit system’s paratransit, a much less reliable service. He generally arrived on time, but he often waited an hour or more after treatment for his ride home. Jesus informed me that he and Marta were arguing more and that he felt she no longer respected him due to losing his job and income; they were no longer having sex. He felt that he was “always on dialysis,” and he missed spending evenings with Araceli. He was having trouble sleeping. He wondered if he “must have done something to offend God” to be in this situation. The IC and I worked with Jesus to contact his former employer’s COBRA administrator, but they did not return our calls and no offer ever arrived. Jesus’ insurance ended and his only option was Emergency Medicaid. Ironically, his binders were now covered 100%, but he lost coverage for “non-emergency medications” such as ACE (Angiotensin-converting enzyme) inhibitors and insulin.
Goals, objectives, and outcome measures
Jesus’ goals differed initially from those of the IDT, the facility, and the company. Each had differing perceptions of the presenting problem. On the surface, Jesus seemed more concerned with his loss of employment and income than his health. The medical staff wanted Jesus to adapt physically to treatment and avoid re-hospitalization; his missing treatment, continuing to eat off-diet foods, and not taking binder medication consistently were the problems in their view. Poor lab results and hospitalizations for fluid overload lead to a lower overall ESRD Quality Incentive Program (QIP) score, reflecting badly on the facility. CMS and the company use the QIP to track how successful our team is at keeping the patients healthy and, consequently, Medicare costs low. Low QIPs may mean reduced Medicare reimbursements per treatment; the facility is only paid when patients come to treatment, so when Jesus missed treatments, important revenue was lost. Leadership viewed Jesus’ potential loss of commercial insurance as the primary problem and wanted assurance we had worked to retain it. Jesus experienced many of the physiological and psychological symptoms of poorly treated ESRD: “I can’t sleep more than two or three hours, so I’m just tired all the time. I know I should be out looking for work, but it’s hard. My wife doesn’t understand why I’m grouchy all the time. She says I need to go back to work, that I’ll feel better then.” I interpreted these messages as reflecting his limited self-efficacy, challenges maintaining his health, and symptoms that could be evidence of depression, “kidney brain” (cognitive and emotional signs of uremia), or both. My goal was to help with these concerns.
My practice effectiveness is harder to define and measure than the medical team’s lab results objectives that define adequacy. Patients come to dialysis to extend their lives, not to seek psychosocial interventions. My first objective was to build rapport with Jesus by engaging him regularly and providing referrals for support services for basic
Meeting place and use of time
Most of the time, I met with Jesus during his treatment and very occasionally by phone. The treatment floor is a large high-ceilinged room with 24 treatment chairs. The chairs are the regulated six feet apart, but this distance does not provide true privacy; even the fact that other patients can see him meeting with me can be seen as a breach. The floor is not especially noisy but wearing masks and face shields make whispering difficult. I offer all my patients the choice of private meetings in my office, but Jesus rarely came due to his time constraints. Virtual telehealth was not used as Jesus was uncomfortable using the health app. Marta and Araceli visited my office a few times without an appointment; I always try to honor drop-ins if my time allows. Ultimately, chairside meetings were the most convenient for both Jesus and me. Meeting him chairside all but guaranteed the opportunity for regular meetings when Jesus came to his scheduled treatments. I round weekly on my patients, and if I saw Jesus was in, we met for five to 30 minutes as needed for impromptu task-focused meetings.
Strategies, interventions, and case management
My intervention with Jesus was influenced by the Multisystems approach (as described by Van Hook, 2014). It is well suited for work with clients with complex social needs and those coping with crisis (such as a new chronic illness diagnosis). It applies a “risk and resiliency” (Van Hook, 2014, p. 270) perspective to examine how environmental and societal systems around a client may interact with potential risk and protective factors. Jesus told me, “Nothing like this has ever happened to me before; I never missed a day of work until I got sick.” Jesus’ identity as a man, a father, and even as an immigrant without legal status was very much connected to his ability to work and earn income for his family. He had overcome so many barriers to achieve his financial and personal success, but he had trouble recognizing his own and his family’s strengths that could help him address this latest challenge. We used an ecomap as a visual guide in this exploration (see Figure 17.1).
Jesus could see how employment had been useful to him, yet had also contributed to jeopardizing his health, which in turn now threatened his livelihood. This understanding helped him realign his priorities; he noted that taking some time off, even by necessity, was an opportunity to reconnect with his family and his church. He and Marta’s different work schedules meant they did not see much of each other; now they could have family time at breakfast with Araceli and take walks or cook together before Marta went to work. Adjusting his diet became a family project. Jesus did some repair work at his church, which led to a new job. Improved adherence to the regimen meant he began to feel better, physically and emotionally, and could even take the subway again.
As the SW on Jesus’ team, I brought a person-centered perspective to his care plan. Through ecomapping, biopsychosocial assessment, and case management, I helped the IDT see Jesus as more than just his disease. Using motivational interviewing and CBT techniques such as behavioral activation and guided discovery, I helped Jesus better verbalize his values and helped him set long-term goals (important for chronic diseases like ESRD). I also made referrals to aid him with nutrition, immigration concerns, and medication. These referrals were especially helpful when Jesus was unemployed.
Stance of the social worker
As a SW in a host medical setting, I recognize the need for humor and delicacy in my interactions with staff and patients. I must sometimes educate and re-educate colleagues and supervisors about the need for interventions beyond the “enforcement” of patient adherence. There is sometimes a tendency to see SWs as “fixers” of undesirable behavior among patients, rather than as practitioners of a more holistic approach to enhancing patients’ well-being. I must advocate for the time and capacity to engage in therapeutic interventions as well as provide concrete services. This occasionally leads to ethical dilemmas. As part of the IDT, I must cooperate with and can sometimes be co-opted by the medical (and economic) goals of the team, facility, and company. Concerns about meeting QIP measures and maximizing revenues can lead to prioritizing admission and retention of healthier patients or those with commercial insurance. These practices do not align with my ethical duty to serve others and advocate for social justice and client self-determination. Time and energy spent
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