Staff Orientation to Psychosocial Needs of People with Kidney Failure
When I worked in my last dialysis clinic, the administrator asked me as the clinic social worker to provide an orientation for new staff to help them understand the patients they would be working with, explain my role, and let them know how I could help them. This was a great way for me to educate staff and reminded me how important it is for social workers to share information about their education, skills, role, and responsibilities with co-workers and patients. Providing an orientation in every clinic could help staff know when to refer and help patients know who to ask for help when they need it.
Designing an orientation program
An orientation about patients’ psychosocial issues should be designed to help staff know how to work with patients who are not like them. They may work with patients of different socioeconomic classes, races, ethnicities, languages, and cultures, people who have those with little formal education, learning deficits or difficulty learning due to hearing or vision problems. It’s important to teach staff how to overcome these differences, but how?
To help staff connect with patients, dialysis staff needed to understand the many psychosocial challenges patients face. I shared with new and existing staff that when they saw a patient as depressed, dependent, and disinterested, they are seeing that patient at what might be the lowest point in their life. I encouraged them to spend as much time as they could getting to know their patients to know what they needed to know to do well. I encouraged them to give patients hope for their future with kidney disease, because without that hope there’s little chance of being able to motivate patients to learn how to follow their treatment plan.
In a staff orientation, the social worker should explain his/her education and state licensure or certification and what that allows him/her to do. Medicare regulations for dialysis require social workers to have a master’s degree in social work from an accredited graduate program. The ESRD regulations require social workers to help meet patients’ psychosocial needs, including counseling and the ESRD Interpretive Guidance states that counseling “should be directed at helping the patients and their family cope with kidney failure and dialysis, follow the treatment plan, and achieve the patient’s goals for rehabilitation.”1 Below are some of the psychosocial challenges patients face that may interfere with treatment goals.
Consider how you might feel if you had a costly life-threatening disease and had to rely on a machine to sustain your life. You would likely worry about how long and how well you could live with that treatment and how the treatment would affect your family and your life goals. Patients on in-center dialysis are reminded how tenuous life can be when patients on their shift don’t return. Patients on home dialysis are reminded how tenuous life can be when their dialysis access or machine doesn’t work like it should or supplies aren’t delivered as scheduled.
Not surprisingly, depression is common in dialysis and is associated with poor outcomes, including hospitalization, withdrawal from dialysis, and death. However, depression has been largely underdiagnosed and untreated for decades. Today, dialysis clinics must screen patients annually for depression and report in CROWNWeb if the screening is positive for depression and if there is a plan to address depression.2 Patients who didn’t know that they were at risk of kidney disease may be angry that they weren’t told what to do to slow or prevent kidney failure—and may start to have negative thoughts. Research with long-term dialysis survivors found that they coped by using positive self-talk or “affirmations.” Common affirmations they used were:
I want to live.
I am still me.
I am still valuable.
I am in control.3
Dialysis staff can share these affirmations with their patients. Doing so may help patients cope with changes that come with kidney failure and dialysis and help them to see the advantages that come with being an active self-manager.
Some patients start dialysis with diagnosed and undiagnosed mental illnesses that can be easily triggered in the dialysis setting where clinics make the rules and patients often feel powerless. Some but not all of these diagnoses include general anxiety disorder, needle phobia, post-traumatic stress disorder, bipolar disorder, borderline personality disorder, and most commonly new patients experience adjustment disorder. It’s important for all staff to listen to patients, accept what they know about their bodies, and consider their values in treatment decisions to help them have the highest quality of life as possible. It helps when staff understand the symptoms of these diagnoses and know emotional or behavioral triggers to avoid that if triggered can spiral out of control. Clinical social workers can help educate staff about mental health diagnoses and address psychosocial problems staff identify. Patient care staff can be the social worker’s best referral source because they spend the most time with patients and are likely to be the first to see when a patient is showing signs of emotional distress. Patients seldom follow through on referrals to outside mental health professionals. This may be because of transportation, financial, or other time demands. Clinical social workers can use brief therapeutic interventions to help relieve depression, anxiety, and other emotional distress in the dialysis clinic, even in the dialysis chair with the patient’s permission.
A 2017 study showed that patients who were poor or African American or Hispanic were less like to get pre-ESRD care.4 Pre-ESRD care might have offered a chance for education to slow the progression of kidney disease, to relieve work-limiting symptoms, to review treatment options for with an eye on the patient’s work goals, and prevent job loss and disability. When thinking about applying for disability, most people, including patients, don’t know that Social Security Disability Insurance (SSDI) only replaces an average of 40% of work income.5 There is a 5-month waiting period for SSDI and the first check isn’t received until 7 months after the month eligibility starts. For those awaiting their first SSDI check or those with too little work history to get SSDI and limited savings, Supplemental Security Income (SSI) pays $771 per month for an individual in 2019. Having low income limits patients’ ability to follow their treatment plan from the foods they eat to the medications they take and even whether they can get to dialysis regularly. People living on disability are living under constant financial stress wondering how they will pay for an emergency. Anxiety about finances contributes to depression.
Having good health insurance helps patients pay for dialysis, transplant, and other healthcare services. Patients who lose their jobs are at risk of losing their job-based health insurance. Most patients on dialysis can get Medicare. Starting a home dialysis training program before the fourth month of dialysis can get Medicare backdated to the month dialysis started. Medicare is secondary to employer group health plans for 30 months. Medigap plans can help people who don’t have other insurance pay Original Medicare out-of-pocket costs. Patients in 31 states can buy a Medigap plan if they apply when they get Medicare.6 Medicare Advantage is a managed care Medicare plan. Medigap plans don’t work with MA plans. Until January 1, 2021, people on dialysis cannot enroll in a Medicare Advantage (MA) plan but they can stay in the one they have when they start dialysis. MA plans can have out-of-pocket costs up to $6,700 in 2019. Today those legally present in the U.S. who don’t qualify for Medicare or other insurance can get a plan through a state-run or federal Marketplace. The law that set up the Marketplace requires insurers to cover people with pre-existing conditions and prohibits annual or lifetime caps on health benefits, but has been under threat of repeal since it went into effect.
Data on new patients shows that job loss is common in the period between 6 months prior to ESRD and the first dialysis treatment.7 In 2016, only 20% of working-age patients (18 through 54) were working in 2016 and only 24% of dialysis clinics offered dialysis shifts starting after 5 p.m.8 Job loss can be difficult financially, socially, and emotionally. Most patients with little or no education about treatment options before they start dialysis are referred for in-center dialysis where they’re assigned the first open station. If this station is during the workday and the job doesn’t allow flex-time, patients may miss too much work to keep their jobs. The Dialysis Outcomes and Practice Patterns Study (DOPPS) found that full-time employment was associated with shorter recovery time after dialysis, but only 32% of patients reported taking 2 hours or less to recover; 41% took 2-6 hours, 17% took 7-12 hours, and 10% took 12+ hours.9 At the same time, patients may not know what symptoms to report—so work-limiting symptoms may go unmanaged and patients feel too sick to work. Dialysis staff need to know they can help patients keep their jobs by:
Routinely and regularly asking patients about their life goals, including working
Prioritizing in-center shifts to accommodate working patients
Having shifts that start after 5 p.m.
Offering home dialysis or referring working patients to clinics that do
Asking patients about recovery time and monitoring the speed of fluid removal to avoid organ stunning using the UFR Calculator at https://www.homedialysis.org/ufr-calculator
Educating and advocating with employers to help them understand that patients on dialysis can work and have protected status under the Americans with Disabilities Act.
Some dialysis patients can drive themselves to treatment, ride with family member, or carpool with other patients. Often, patients who are poor and elderly lack access to personal transportation. Medicare pays for transportation for emergencies, but pays for non-emergency ambulance transportation to/from dialysis only if a physician orders it and the patient meets specific criteria. Medicaid has covered non-emergency medical transportation (NEMT) for those who are eligible for Medicaid since 1966. In 2015, 17% of Medicaid-covered non-emergency medical transportation (NEMT) in 32 states was for people on dialysis.10 People living in some states that expanded Medicaid are not be eligible for NEMT due to waivers. In 2018, the Centers for Medicare & Medicaid Services proposed a rule that would change NEMT from a mandatory benefit under Medicaid to an optional one.11 A 2018 survey of 460 patients with kidney disease provided by LogistiCare Solutions LLC, a NEMT provider, found that 52.8% of dialysis patients surveyed reported that they would not be able to get to any medical appointments without NEMT.12 Transportation problems my patients encountered included missed or late pick-ups leading to late arrivals, pressure from drivers to be ready at their scheduled pickup time leading patients to ask off dialysis early, and hour plus rides in vans, causing them to miss meals or medications. Lack of transportation and transportation problems can adversely affect dialysis adequacy, nutritional status and healthcare outcomes.
People who live in rural areas may live much farther from the closest dialysis clinic than those who live in urban or suburban areas. They may have to move from their homes and support systems if they can’t do home dialysis. People who live on disability may have to move to lower cost housing when they no longer work and get SSI or SSDI. They, too, may have to leave their neighborhoods and friends. HUD has rent-subsidized housing, but there is a limited supply in the U.S. People who are poor have difficulty paying for housing that isn’t rent-subsidized. Some live with family or friends; others become homeless living outside or in shelters. Homelessness affects how well patients maintain personal hygiene. Poor hygiene can increase a patient’s risk for infection. People who are poor or homeless often depend on food banks or meals prepared by charities where foods don’t fit with the renal diet. Managing medications is difficult when homeless, especially when medications must be refrigerated. It’s important to know whether a patient is facing these barriers to attempt to overcome them.
Patients may be married or single, in a committed relationship or not dating. Dialysis patients may experience problems with self-esteem which may adversely affect their relationships. Some patients have reported that dialysis destroyed their marriages and love lives, while others report that dialysis made their marriage stronger. It’s important for dialysis staff to pay attention to the needs of patients’ spouses and/or care partners. Ignore them at your peril— because without their help, patients may have more difficulty following their treatment plans and home patients may not have the support they need to stay at home.
As stated previously, many patients are depressed. Patients who are depressed can affect the mood of those around them including family members and staff who may not know how to help.13 Men are less likely to talk about their feelings than women. Although women often express depression as sadness, men often express depression as anger and aggression.14 When anger and aggression is directed at other patients, doctors or the care team, this can make patients at risk of involuntary discharge when what could reduce that risk is diagnosing and treating angry patients for depression. Social workers can help to educate the staff using the Decreasing Dialysis Patient-Provider Conflict manual15 to resolve conflicts before they escalate. Dialysis staff should refer depressed patients to the dialysis social worker. The social worker should encourage patients who are depressed to seek their help or help from a community mental health provider.
Social workers are valuable assets to direct care staff and dialysis patients. They understand the challenges patients face and know about federal, state and local resources that can help. However, social workers don’t have a magic wand when safety nets don’t exist and there aren’t resources to help. This can be frustrating to patients, staff, and social workers.
Center for Medicare & Medicaid Services. ESD Interpretive Guidance Version 1.1, October 3, 2008. https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/GuidanceforLawsAndRegulations/Downloads/esrdpgmguidance.pdf (Accessed 4/28/2019).↩
Centers for Medicare & Medicaid Services (CMS) End-Stage Renal Disease Quality Incentive Program (ESRD QIP) Payment Year (PY) 2021 Measure Technical Specifications. https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/ESRDQIP/Downloads/PY-2021-Final-Technical-Specifications-ESRD.pdf (Accessed 4/28/2019).↩
Curtin RB(1), Mapes D, Petillo M, Oberley E. Long-term dialysis survivors: a transformational experience. Qual Health Res. 2002 May;12(5):609-24.↩
Nee R, Yuan CM, Hurst FP, Jindal RM, Agodoa LY, Abbott KC. Impact of poverty and race on pre-end-stage renal disease care among dialysis patients in the United States. Clin Kidney J. 2016;10(1):55–61. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5469551 (Accessed 4/28/2019).↩
National Academy of Social Insurance. What Is Social Security Disability Insurance. https://www.nasi.org/learn/socialsecurity/disability-insurance (Accessed 4/25/2019).↩
Medicare. When can I buy Medigap. https://www.medicare.gov/supplements-other-insurance/when-can-i-buy-medigap (Accessed 4/28/2019).↩
United States Renal Data System. 2018 USRDS annual data report. Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2018. Table C.2. https://www.usrds.org/2018/ref/ESRD_Ref_C_PatientChars_2018.xlsx (Accessed 4/28/2019).↩
ESRD Network Coordinating Center. 2016 End Stage Renal Disease Network (ESRD) Organization Program Summary Annual Report. https://www.esrdncc.org/globalassets/2016esrdnccsummaryannualreport.pdf (Accessed 4/25/2019).↩
Rayner HC, Zepel L, Fuller DS, et al. Recovery time, quality of life, and mortality in hemodialysis patients: The Dialysis Outcomes and Practice Patterns Study (DOPPS). Am J Kidney Dis. 2014;64(1):86–94. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4069238 (Accessed 4/28/2019).↩
Kaiser Family Foundation. Medicaid Non-Emergency Medical Transportation: Overview and Key Issues in Medicaid Expansion Waivers. https://www.kff.org/medicaid/issue-brief/medicaid-non-emergency-medical-transportation-overview-and-key-issues-in-medicaid-expansion-waivers/ (Accessed 4/28/2019).↩
Department of Health & Human Services/Centers for Medicare & Medicaid Services. Non-emergency Medical Transportation in Medicaid (CMS-2481P). Fall 2018. https://www.reginfo.gov/public/do/eAgendaViewRule?pubId=201810&RIN=0938-AT81 (Accessed 5/22/2019)↩
Great Blue. NEMT Impact Study for MATC, 2016. https://mtaccoalition.org/wp-content/uploads/2018/08/Survey-Report.pdf (Accessed 4/28/2019).↩
Is Depression Contagious? Psychology Today, June 16, 2016. https://www.psychologytoday.com/us/blog/how-be-yourself/201606/is-depression-contagious (Accessed 4/30/2019)↩
National Institute of Mental Health. Men and Depression. https://www.nimh.nih.gov/health/publications/men-and-depression/index.shtml (Accessed 4/30/2019).↩
Forum of ESRD Networks. Decreasing Dialysis Patient-Provider Conflict (DPC) Provider Manual. http://esrdnetworks.org/resources/special-projects/copy_of_DPPCProviderManual.pdf (Accessed 5/22/2019)↩