1. NEPHROLOGY SOCIAL WORK Chapter 18 Handbook of Health Social Work, 2 nd Edition Created by Teri Browne

2.  End-stage renal disease (ESRD)- chronic condition that results in kidney failure and necessitates renal replacement therapy via hemodialysis, peritoneal dialysis, or a kidney transplant (also known as “chronic kidney disease stage 5)  ESRD is an important practice focus for social work because it provides the only Mediare mandate for MSW service provision for a disease or treatment category END STAGE RENAL DISEASE AS A PUBLIC HEALTH ISSUE

3.  ESRD is cause primarily by diabetes and hypertension, but also by:  Lupus  Gout  Chemotherapy  Cancer  Substance Abuse  Other kidney diseases (glomerulonephritis, nephritis, and polycystic kidney disease) THE CAUSES OF ESRD

4.  The average 2010 Medicare cost per patient for hemodialysis was $77,506 per year  The cost for peritoneal dialysis was $57,639  The cost for kidney transplantation was about $116,100 for the year in which the transplant was received and $26,668 per year after the transplant COSTS OF ESRD

5.  Hemodialysis- a medical treatment in which a patient is connected to a dialysis machine via tubing joined to an external catheter in the patient’s chest or needles inserted into a permanent vascular access (also called fistulas, grafts) that is usually in the arm which is attached to tubing that leads to the machine.  The machine consists of tubing, solution, monitors, and a filtering device called a dialyzer that removes excess fluid from the patient and cleanses the blood prior to its return to the body through tubing connected to the catherter or access. WHAT IS HEMODIALYSIS?

6.  In-center Dialysis- usually performed three times a week for at least three hours per treatment  Monitored by nurses and patient care technicians  Hemodialysis patients see the health care team while receiving treatments WHAT IS HEMODIALYSIS?- CONTINUED

7.  Home hemodialysis is a treatment option that allows patients to perform their own dialysis at home  Patients and social suport network members receive comprehensive training  Equipment and supplies are delivered and set up in the home  Home hemodialysis provides a more comfortable environment for the patient and eliminates travel  Patients see their dialysis teams when they return to the dialysis clinic for laboratory testing and follow-up visits WHAT IS HOME HEMODIALYSIS?

8.  Peritoneal dialysis is a renal replacement treatment modality that is conducted by patients themselves  A catheter is surgically implanted in patients that protrudes from the abdomen  This is dne daily, either several times throughout the day or overnight via a machine  Peritoneal dialysis patients see their healthcare team during monthly visits to the clinic WHAT IS PERITONEAL DIALYSIS?

9.  Kidney transplantation is a surgical procedure in which a donor kidney is placed in the ESRD patient’s body  The donor kidney can be deceased or a living donor  It involves extensive evaluation and testing  If a living donor cannot be located, the patient is placed on a waiting list for a deceased donor kidney WHAT IS KIDNEY TRANSPLANTATION?

10.  An altruistic kidney donation is when a person gives their kidney to someone they do not know personally  A growing phenomenon in kidney transplantation is called “paired donors”  An example of paired donors can be found on page 470 WHAT ARE ALTRUISTIC KIDNEY DONATIONS?

11.  Acute dialysis was first done in the 1940s  The first kidney transplant was performed in 1951  Chronic outpatient dialysis was first available in the early 1960s  In 1965, there were only 200 dialysis patients in the world  Before 1972, hemodialysis machines were scarce and dialysis was largely paid for by patients or with donated funds  Selection committees chose individuals for dialysis based on their “social worth”  Preference was given to breadwinners and community leaders A QUICK HISTORY OF DIALYSIS

12.  On October 30, 1072- the national ESRD program, Public Law 92-601 was passed  This law provides Medicare coverage of dialysis or kidney transplantation for all ESRD patients regardless of age  This coverage is unique, because ESRD is the only disease category that guarantees Medicare eligibility A QUICK HISTORY OF DIALYSIS- CONTINUED

13.  Individuals 65 years and older are the fastest increasing population among ESRD patients today  This group has more comorbidities, greater psychosocial issues and needs, and more physical problems  Certain groups in the United States are effected disproportionately:  African-Americans  Hispanics  American Indians  Alaskan Natives  White American males are more likely to receive a kidney transplant than any other demographic group in the United States DEMOGRAPHICS OF RENAL PATIENTS

14.  Lack of preventative care  Patient preference  Socioeceonomic disadvantage  Distrust of the medical community  Lack of knowledge about kidney transplantation  Medical reasons REASONS FOR DISPARITIES

15.  89% of ESRD patients report experiencing significant lifestyle changes from the disease  Psychosocial barriers to ESRD care:  Adjustment and coping to the illness and treatment regime(s)  Medical complications and problems  Issues related to pain, palliative care, and end-of-life care  Social role adjustment: familial, social, and vocational  Concrete needs: financial loss, insurance problems, prescription coverage  Diminished quality of life  Body image issues  Numerous losses; financial security, health, libido, strength, independence, mobility, schedule flexibility, sleep, appetite, freedom with diet and fluid PSYCHOSOCIAL ASPECTS

16.  ESRD may impair sense of taste, diminish appetite and cause bone disease that can require surgery and impair a person’s ability to walk  ESRD patients may have anemia and uremia, which lead to confusion, lethargy, and sleep problems  Dialysis patients often must take several phosphorous- binding tablets with every meal as well as numerous other medications (some take up to 25 pills a day)  Self-management of oral medications is a significant problem  Researchers have found ESRD patients to be significantly more likely than others to commit suicide DISEASE- RELATED PSYCHOSOCIAL ASPECTS

17.  Researchers have noted that ESRD results in anxiety and depression  More likely to have poor nutritional outcomes  Higher mortality rate  Malnutrition  Less likely to adhere to their recommended treatment regimes  Depression can lead to hospitalization ANXIETY AND DEPRESSION AMONG ESRD PATIENTS

18.  Insomnia and sleeping problems  Body image issues  Vascular accesses for hemodialysis can become quite large and visible on patients arms  Peritoneal accesses and catheters are surgically implanted and protrude from the body  Immunosupporessant drugs and other medications can cause weight gain and other physical changes  Decreased rate of fertility among female ESRD patients  Acute and chronic pain from surgeries, cramping, needlesticks, neuropathy, and bone disease OTHER DISEASE-RELATED PSYCHOSOCIAL ASPECTS

19.  Difficulty coping with the illness and treatment regimes  Financial burden/loss of income  Extra time needed to care for patients and transport them to treatments  Limits work hours IMPACT ON FAMILIES

20.  ESRD patients are required to assume strict diets  Extreme weight gain between dialysis treatments can lead to discomfort during hemodialysis and removal of excessive fluid results in severe cramping and low blood pressure  Peritoneal dialysis patients have much less restrictive dietary and fluid intake restrictions  Transplant patients normally are not required to follow renal diets or limit their fluids TREATMENT-RELATED PSYCHOSOCIAL ASPECTS

21.  Barriers to quality diet may include patients’ education and literacy level  Insurance may not allow patients to obtain recommended nutritional supplements  Social support availability is also related to poor diet because ESRD patients may need assistance to purchase groceries and prepare meals RAMIFICATIONS OF PSYCHOSOCIAL ISSUES

22.  The significant psychosocial issues faced by ESRD and their families requires social work intervention  This practice is known as nephrology social work, or renal social work  Medicare mandates that a master’s level social worker be on staff in every dialysis center and kidney transplant program  The focus of these social worker’s is to imporove the patients ability to adjust and cope with chronic illness and the healthcare system’s ability to meet the needs of the patient SOCIAL WORK INTERVENTION

23.  Social workers are included on renal medical teams (which also include the patient, their family members, the nephrologist, the nurses, dieticians, patient-care technicians, surgeons, and pharmacists)  Sudies show that a team approach to patient education (which includes a social worker) is more successful than a single-disciplinary approach  A report on morbidity and mortality of dialysis by the National Institutes of Health claims that social and psychological welfare and the quality of life of the dialysis patient are favorably influenced by the involvement of a multidisciplinary team SOCIAL WORK INTERVENTION- CONTINUED

24.  Nephrology social work interventions tend to be valued by patients  1994 survey found that 90% of ESRD patients believed the “access to a nephrology social worker was important”  Patients relied on nephrology social workers to assist them in coping, adjustment, and rehabilitation  Dialysis patients have ranked a “helpful social worker” as being more important to them than nephrologists or nurses  Dialysis patients also found that social workers were twice as helpful as nephrologists in aiding the patient in deciding between hemodialysis and peritoneal dialysis for treatment. SOCIAL WORK INTERVENTIONS- CONTINUED

25.  Assessment  Counseling  Education  Crisis Intervention  End-Of-Life Care  Case Management  Rehabilitation Assistance  Patient Advocacy NEPHROLOGY SOCIAL WORK TASKS

26.  Nephrology social workers conduct an assessment of patients’ phsychoocial statust to identify their strengths, needs, and the areas for social work intervention  Assessments are completed for every dialysis and transplant patient and take into account each patient’s social, psychological, financial, cultural, and environmental needs  Social workers also assess transplant donors ASSESSMENT

27.  Nephrology social workers provide emotional support, encouragement, and counseling to patients and members of their support networks  ESRD patients may have difficulty adjusting to the illness and treatment regimes, social workers help them cope by providing education and counseling to decrease depression  One study found that 76% of depressed dialysis patients indicate that they prefer to seek counseling from the nephrology social worker rather than pursue care from an outside mental health practitioner COUNSELING AND EDUCATION

28.  Nephrology social workers provide crisis interventions in dialysis and transplant units to patients who may act inappropriately during hemodialysis, (i.e yelling at staff or other patients, threatening violence)  Social workers often effectively mediate conflicts in dialysis settings CRISIS INTERVENTION

29.  Social workers provide end-of-life care and information to ESRD patients and their families.  Terminally ill ESRD patients and their families welcomed more emotional support and other interventions from social workers.  ESRD workgroup for nephrology social workers entitled “Promoting Excellence in End-Of-Life Care” END-OF-LIFE CARE

30.  Social workers provide information to patients and their families about resources and information that are unknown to the family  Renal Social workers routinely provide case management services, including information, referrals, and linkages to local, state, and federal agencies and programs CASE MANAGEMENT

31.  Social workers help patients maximize their rehabilitation status by assessing barriers to patient goals of rehabilitation, providing patients with education and encouragement, and providing case management with local or state vocational rehabilitation agencies  Different roles for social workers related to rehabilitation are: Enabler/facilitator; Educator/advocate; and Administrator REHABILITATION ASSISTANCE

32.  Nephrology social workers collaborate with the renal team in providing patient care by participating in quality assurance programs, team care planning, and training of other health- care professionals on the topic of psychosocial issues  The 2008 Medicare Conditions for Coverage for dialysis units mandate that every unit implement a Quality Assessment and Performance Improvement (QAPI) program to assess patient and clinical outcomes TEAM COLLABORATION

33.  Social workers advocate for their patients within their clinics as well as with community agencies (see box 18.4 text)  Social workers also advocate for patients on a systems level with various organizations and governmental agencies  Renal Social Workers can help patients navigate complex systems of service provision, and advocate for patients with community providers that are not familiar with their special needs ADVOCACY

34.  Nephrology social workers are committed to social reform and influencing policy and programs affecting renal patients  Social workers also are employed in macrolevel services to the ESRD community: i.e clinical managers, social work directors, social work coordinators, researchers, and board members of agencies COMMUNITY-LEVEL SOCIAL WORK

35.  Social workers must often assume responsibility of clerical tasks (transportation arrangements, information on medicare/medicaid, etc.) although these tasks hinder social workers ability to provide clinical services to patients and their families  Surveyed social workers spent 38% of their time on insurance, billing, and clerical tasks versus 25% on counseling and assessing patients PROFESSIONALIZATION OF NEPHROLOGY SOCIAL WORKERS

36.  Positive correlation between job satisfaction and the amount of time spent in counseling, educating patients  Negative correlation between job satisfaction and time spent with insurance and clerical tasks  Large caseloads linked to decreased patient satisfaction & less successful patient rehabilitation outcomes PROFESSIONALIZATION OF NEPHROLOGY SOCIAL WORKERS (CONTINUED)

37.  Affiliated with NKF  Goals  promote patient, public, professional education  ensure qualified social workers are in ESRD settings  Lobbied for inclusion of master’s-level social workers on renal teams  Annual training program, publications, newsletter, set policies and practice COUNCIL OF NEPHROLOGY SOCIAL WORKERS

38.  ESRD significant public health concern  Nephrology social workers proved effective  Social workers have various practice settings and work with a variety of clients CONCLUSION