Psychosocial and Financial Aspects of Transplantation

Mara Hersh Rifkin

The diagnosis of advancing kidney disease is life changing, not only for the patient, but also for family members. Many questions and concerns may arise that can be addressed by the social worker who is highly invested in patient care and treatment, including the following:

What treatment choice is best for me?
How will my life change because of my illness?
How will my illness affect my family?
How will I pay for my treatments?
Will I be able to continue working and return to my daily activities?

ROLE OF THE TRANSPLANTATION SOCIAL WORKER

Clinical social workers, who are licensed and have a masters degree in social work, play a key role before and after kidney transplantation. After patients are referred to the transplantation center, they are scheduled for a pretransplantation evaluation to afford the patient, caregiver, and family members an opportunity to obtain sufficient information to maximize the possibility of a successful outcome. In the United States, the Center for Medicare Services (CMS) guidelines for social services state that the transplantation center must make social services available, facilitated by qualified social workers, to transplant recipients, living donors, and their families.

The transplantation social worker meets with the patient and family members to assess important psychosocial factors, which could significantly affect the outcome of the transplant. These factors include adequacy of support, adherence, substance use, psychiatric status, access to resources, and the ability to understand and cope with the changes in health status, prognosis, and treatment options. If a patient is experiencing a significant psychosocial problem, the patient may not be approved for transplantation until this issue is addressed. Table 20.1 identifies the areas that should be covered in a comprehensive psychosocial assessment and the availability of community resources.

When a patient is admitted to the hospital for kidney transplantation, the clinical social worker assists both the patient and family in coping with the emotional, psychosocial, and financial aspects of post-transplantation care. Outpatient clinical social work services are also often available to patients and their family members. The transplantation social worker can help patients understand and cope with their feelings and adjust to a new way of life with a kidney transplant. They can assist patients in resolving issues surrounding employment, finances, insurance, and role changes in relationships, issues with sex and intimacy, and concerns about death and dying. In this chapter many of the specific recommendations relate to the care of transplant recipients residing in the United States.

The clinical social worker on the transplantation team is an expert on community resources and can refer patients and family members to the appropriate community resources they might need, such as disability insurance, Social Security, vocational rehabilitation, home care and medical equipment, support groups, and financial resources.

TABLE 20.1 Major Areas Covered in Psychosocial Assessment

Illness Assessment
	1.	Illness history and impact on patient’s functioning, understanding, reaction, and adjustment
	2.	Patient’s knowledge of transplantation, process of being referred to transplant center, understanding of the assessment process for candidacy, feelings about transplantation
Patient Assessment
Personal
	Age, life cycle stage
	Physical functioning
	Intellectual functioning
	Emotional functioning
	Sexual functioning
	Major stressful events
	Coping style and approaches
	Religious beliefs and faith
	History of substance abuse
	Ability to comply with medical regime
Educational
Level of education attained
Type of Occupation
	Length of employment
	Stability of present or recent job
Financial
Sources of income and other resources, their adequacy for current lifestyle, and their adequacy for transplantation and for future medical needs
Support System Assessment
	Family
	Composition—spouse and children; age, education, occupation; needs, availability
	Role structure—effect of illness on roles
	Interactions—patterns and quality of communication
	Functioning—quality of family life
	Problem-solving approach and skills
Social
	Extended family—quality of contacts
	Friends, neighbors, colleagues—quality of relationships
	Others—religious, cultural, and social affiliations
Environmental
	Housing and transportation
	Need for relocation
	Need for travel alternatives

PSYCHOSOCIAL BENEFITS OF TRANSPLANTATION

The quality of life for transplant recipients is generally better than the quality of life for dialysis patients. About 80% of transplant recipients function psychosocially at normal levels, compared with 50% of dialysis patients. Dialysis patients show more morbidity on the General Health Questionnaire (which evaluates loss of emotional control and depression) than do transplant recipients and healthy controls. These studies, however, do not address transplant failure, which may result in a significant decrease in quality of life.

The obvious benefit of kidney transplantation is freedom from the constraints of dialysis. Successful transplantation permits much more personal time for an individual who is freed from the necessity of being connected to a dialysis machine for several hours 3 times a week at a dialysis facility or daily home peritoneal dialysis. Recent advances in home hemodialysis have allowed individuals more freedom to dialyze at home on their own schedules, but all these treatments remain time consuming. On average, patients spend anywhere from 40 to 50 hours a month on hemodialysis, 60 to 70 hours on continuous ambulatory peritoneal dialysis (CAPD), 280 hours on continuous cycling peritoneal dialysis (CCPD), or 50 hours on self-care home hemodialysis treatments. There are also significant psychosocial stressors associated with dialysis, including issues surrounding machine dependence, the ability to maintain full-time employment, loss of spontaneity, and reduced time for family activities.

Transplantation permits greater flexibility and more convenience when traveling. Patients do not have the stress of arraigning transient hemodialysis treatments in other cities ahead of time. Transplant offers the freedom to actually plan a vacation or take urgent business trips. Many patients have reported that they have not taken an extended trip since commencing dialysis because of inconvenience and concerns about being too far away from their home dialysis centers or dialyzing at an unfamiliar dialysis center. There is also greater dietary flexibility (see Chapter 19) with kidney transplantation. Fluid restrictions are often difficult for dialysis patients to adhere to in warmer climates and during the summer. Patients can also find it difficult to follow the dietary restrictions necessitated by being on dialysis.

Transplant recipients generally have more energy and stamina and can spend more time dealing with issues outside of their own health problems. The time alone saved in being off dialysis is about 50 hours per month, or 600 hours per year. This can result in increased earning potential and increased family and personal time. The long-term complications of dialysis may be avoided (see Chapter 1), and many patients view a transplant as a symbol of freedom and restored health.

Ideally, after receiving a kidney transplant, patients are able to return to normal functioning by going back to work or school and getting off of disability. Patients are encouraged to engage in vocational rehabilitation while they are on dialysis because the waiting time for a deceased donor transplant may be years, during which time they may complete training courses or school programs. Social Security offers programs for vocational training and trial work programs that patients can take advantage of while they are receiving disability benefits, and assists with job placement to help individuals get back into the workforce when they are medically able to do so.

Financial Benefits of Transplantation

Relative to individuals who are suffering from other medical conditions, patients with chronic kidney disease in need of dialysis or transplantation receive special treatment in the United States health care system. Since 1972, patients with kidney failure have been eligible for subsidized public health

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