Social Workers Are a Valuable Resource to Help Home Dialyzors Cope with Dialysis
Dialysis: Miracle and Burden
Dialysis is a miracle treatment that can extend life when kidneys fail. At the same time, dialysis—even at home—brings on unplanned life changes, some of which can cause depression and anger. Patients may misdirect these feelings at themselves, if they failed to make healthier lifestyle choices or, direct them at physicians if they failed to warn of kidney disease in time to slow progression. Friends and loved ones may be targets if they are viewed as healthy and able to do things the patient may not be able to do. Even though it’s lifesaving, having to do PD daily or home HD multiple times a week, take several medicines each day, and resist the temptation to eat and drink as desired can feel like burdens. Patients may start to feel a sense of hopelessness and helplessness that comes with the need to wait for a kidney transplant or face a possibly shortened lifespan.
Consequences of Depression
Depression among people on dialysis—at least in-center HD—has a number of negative consequences:
- A study of 1,000 in-center HD patients in 1997 found that 25% had mental component summary (MCS) scores on the SF-36 survey that indicated depression. Those with low MCS scores and high physical component summary (PCS) scores were also more likely to skip or shorten treatments.1
- Among 286 in-center HD patients between 2009 and 2011, depression was independently linked with a higher risk of skipping and shortening treatments, ER visits, hopsital stays, and death.2
- A 2012 Fresenius study3 of 6,415 in-center HD patients found that each 1-point increase in a depression score raised the unadjusted hazard score for death by 9%, and for dialysis withdrawal by 15%.
Finally, a study published in 20164 found that among 210 in-center HD patients screened for depression, 100 (47.6%) had scores of 10 or higher, indicating depression. Of those 100, 15 (15%) reporting having had suicidal thoughts. Sadly, 3.8% didn’t recognize their depression symptoms, and only 41% discussed symptoms they did recognize with a healthcare provider. The most commonly reported contributing factors to depression were:
Managing comorbidities/complications (19.3%)
Being on dialysis (17.2%)
Family/other personal issues (12.8%)
Financial problems (10.7%)
Depression & Pain Assessments in Dialysis
Starting on January 1, 2016, for payment year 2018, the ESRD Quality Incentive Payment (QIP) system requires dialysis clinics to screen most patients for depression at least once before February 1, 2017. Clinics must report in CROWNWeb if the screening was positive, negative, or not documented. If screening was positive, the clinic must report in CROWNWeb if there is documentation of a follow-up plan in the medical record or not. Some patients are not eligible for depression screening, including those under age 12 or those who have been treated at the clinic for <90 days. Facilities with a CCN open date after July 1, 2016 or that treated fewer than 11 patients in calendar year 2016 don’t have to report this year. This requirement is based on the National Quality Forum’s endorsed measure #0418.
Due to the stigma of mental illness, many patients don’t want to admit that they are depressed, and others may not recognize the problem when they have it. Since the home training nurse has the most contact, s/he needs to report to the doctor and social worker when a home dialysis patient may be depressed, and encourage patients to report any of these symptoms from the National Institute of Mental Health’s Chronic Illness and Mental Health: Recognizing and Treating Depression:
- Feeling sad, irritable, or anxious
- Feeling empty, hopeless, guilty, or worthless
- Loss of pleasure in usually-enjoyed hobbies or activities, including sex
- Fatigue and decreased energy, feeling listless
- Trouble concentrating, remembering details, and making decisions
- Not being able to sleep, or sleeping too much. Waking too early
- Eating too much or not wanting to eat at all, possibly with unplanned weight gain or loss
- Thoughts of death, suicide or suicide attempts
- Aches or pains, headaches, cramps, or digestive problems without a clear physical cause and/or that do not ease even with treatment5
Psychosocial Interventions Can Help
Many patients and staff don’t realize that social workers with clinical licenses provide most (60%) of the mental health counseling in the United States today, much more than psychiatrists, psychologists or psychiatric nurses.6 Many dialysis social workers have clinical social work licenses, and others are obtaining the supervision they need to seek clinical licensure. Some clinical social workers in dialysis clinics worked in mental health prior to dialysis. Social workers can provide early and ongoing education to patients and staff about their role and how they can help patients who are depressed or having other problems coping with kidney disease and dialysis.
The ESRD Conditions for Coverage at 42 CFR 494.140 (V681) requires all staff to operate within the scope of the license or certification and 42 CFR 494.80(a)(7) (V510), and requires social workers to assess patients’ needs, including their mental health history. And, 42 CFR 494.90(a)(6) (V552) requires social workers to provide counseling to “assist the patient in achieving and sustaining an appropriate psychosocial status…”7 Clinical social workers are allowed by their state licenses to provide counseling in all states, and some states allow MSWs without a clinical license to provide counseling as well, if supervised by a licensed clinical social worker. The Association of Social Work Boards keeps a database of individual state laws and regulations that the dialysis social worker and clinic management can review to assure that the social worker is licensed at the appropriate level to address the psychosocial needs of patients.8
A toolkit of cognitive behavioral and mindfulness tools has been developed for social workers to share with their depressed patients in an effort to teach them how to self-manage their depression. According to its website, the Symptom Targeted Intervention (STI) evidence-based program and toolkit has been used in more than 5,000 dialysis clinics in the U.S., Canada, and the U.K to date. The toolkit has successfully increased engagement, reduced hospitalizations, eased depression symptoms, and reduced the number of missed treatments.9
All dialysis social workers and dialysis staff can encourage patients to:
- Learn about and choose a treatment that best fits their values and lifestyle. MEI’s free My Life, My Dialysis Choice decision aid can help.
- Take part in paid or volunteer work and other enjoyable activities
- Socialize with friends and family
- Talk to patient mentors
- Recognize what makes them unique and valuable to their family, friends, and community
- Set achievable daily goals
- Reward themselves for successes, no matter how small
There is no need for dialysis patients to suffer with depression, be hospitalized more, and face death too soon when clinics are required to screen for depression, and have masters-prepared social workers who are willing and able to help and are required to address adjustment difficulties—including depression. Too-high caseloads and inappropriate task assignment, barriers that can prevent social workers from performing these functions, need to be eliminated. Evidence-based research has found that many dialysis patients are depressed and interventions can help reduce depression. Addressing depression head-on will be a win-win-win for patients and their loved ones, social workers, and facilities.
DeOreo PB. Hemodialysis patient-assessed functional health status predicts continued survival, hospitalization, and dialysis-attendance compliance. Am J Kidney Dis. 1997 Aug;30(2):204-12.↩
Weisbord SD, Mor MK, Sevick MA, Shields AM, Rollman BL, Palevsky PM, Arnold RM, Green JA, Fine MJ. Associations of depressive symptoms and pain with dialysis adherence, health resource utilization, and mortality in patients receiving chronic hemodialysis. Clin J Am Soc Nephrol. 2014 Sep 5;9(9):1594-602.↩
Lacson E Jr, Li NC, Guerra-Dean S, Lazarus M, Hakim R, Finkelstein FO. Depressive symptoms associate with high mortality risk and dialysis withdrawal in incident hemodialysis patients. Nephrol Dial Transplant. 2012 Jul;27(7):2921-8.↩
Song MK, Ward SE, Hladik GA, Bridgman JC, Gilet CA. Depressive symptom severity, contributing factors, and self-management among chronic dialysis patients. Hemodial Int. 2016 Apr;20(2):286-92.↩
US Department of Health and Human Services, National Institutes of Health, National Institute of Mental Health, Chronic Illness and Mental Health: Recognizing and Treating Depression at http://www.nimh.nih.gov/health/publications/chronic-illness-mental-health-2015/index.shtml (accessed May 22, 2016)↩
National Association of Social Workers at https://www.socialworkers.org/pressroom/features/issue/mental.asp (accessed May 22, 2016)↩
Part 494 Conditions for Coverage for End-Stage Renal Disease Facilities Interpretive Guidance, Final Version 1.1, October 3, 2008, http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/GuidanceforLawsAndRegulations/Downloads/esrdpgmguidance.pdf (accessed May 22, 2016)↩
Association of Social Work Boards, State Laws and Regulations at https://www.datapathdesign.com/ASWB/Laws/Prod/cgi-bin/LawWebRpts2DLL.dll/ (accessed May 22, 2016)↩