LIFE CHANGES

Living with chronic kidney failure is a challenge for the person with the kidney failure as well as family members.

• Travel
• Family Impact
• Sexuality
• Employment
• Activity
• Sleep
• Finances
• Appearance
• Hospitalizations
• Transportation
• Time
• Clothing
• Compliance
• The Renal Social Worker

An essential aspect of the renal dialysis lifestyle is the encouragement to maintain as independent a lifestyle as possible. This means that a patient, and the well-family members should continue regular activities of daily living, including leisure time travel in order to give meaning to their pursuits and goals. As renal social workers, we assist patients and families in the pursuit of quality of life interests, especially travel. Many patients, prior to receiving dialysis, have traveled on vacation, or on business, which promotes heightened independence. Some of our patients prefer not to travel, or wish to travel only locally within one’s municipality, or region. We assess every patient and family individually, and then based upon level of interest, we encourage people to utilize transient dialysis services.

Transient dialysis is a means of arranging dialysis treatments out of one’s own unit, permitting travel, while best simulating the parameters of the dialysis or peritoneal dialysis treatment. For instance, a patient might wish to travel to the Jersey shore. We assist the patient in identifying the dialysis unit of choice, send the paperwork, and arrange times available as per patient request. Thus, the patient/family member(s) can travel as frequently as they wish, thus lessening inhibitions re: treatment locality.

Insurance Coverage for Transient Treatments

• Medicare coverage: Pays anywhere within United States and its territories. (N.B. – a supplemental coverage, life Medigap, will only cover what Medicare will allow.)
• Private Insurance: Call your insurance representative to inquire about coverage for dialysis treatments anywhere (even outside of the USA). Many private plans offer reimbursement for transient dialysis treatments.
• Managed Care: Call your insurance representative and PCP to obtain authorization. Inquire if out of network expenses apply.
• Medicaid: State program. Generally pays in the same state. Ask your Renal Social Worker for assistance if travel out of state.

Dialysis Cruise Ships

We also encourage patients and their families/loved ones to take cruise ships, especially if they are accustomed to travel by ship. These cruises are staffed by nephrologists, registered nurses, and patient care technicians, just as in your dialysis facility. (Please ask your Renal Social Worker for specific information and referral sources.)

• Medicare and Medicaid: Do not pay for treatments on cruise ships.
• Private Insurance and Managed Care: You need to pay out of pocket first, then submit claim to your insurance company. Before making arrangements, call your insurance company to find out benefit for treatments. Ask if referrals or authorizations are needed.

As a newly diagnosed patient considers the undertaking of choosing renal dialysis therapy, whether it will be the hemodialysis or peritoneal dialysis modality, he/she often cannot absorb the multifaceted ways this choice will modify or change outright his/her lifestyle prior to treatment. The medical necessity of initiating dialysis to maintain optimal kidney function often surpasses one’s consideration of just how this new commitment will create needs in other arenas, specifically the following domains: biopsychosocial, socioeconomic, intrapsychic, and interpersonal. These areas often become more pronounced, bringing with them issues which require assistance of the clinically trained helping professional to explore and identify with the patient. Together they find and utilize patient strengths, coping mechanisms and resources (family and community) to restore maximal quality of life.

For most patients, the need for treatment to alleviate symptoms created by renal failure is immediate and overrides other areas which are impacted by onset of illness. Issues of sexual expression between couples can become compromised due to physical changes in the dialysis recipient. They must redefine their self-perceptions - as individuals and as two parts of a dyad. Conflicting feelings - anger, grief, guilt, shame, regret, fear of loss of competency, and fear of impotence - often evolve within the individual and well-partner). Counseling for the individual patient and the couple is rendered as part of clinical social work services. Part of the reframing of the couple’s self-perception is the re-establishment of intimacy and exploring different means of expression. Medical questions and treatment options can also be helpful to assist the patient in enhancing physical expressions of intimacy. All questions regarding medical treatments should be referred to the nephrologist. For those couples who wish to have more structured couple’s therapy intervention, the Renal Social Worker will expedite referrals to specialized agencies outside of the dialysis unit.

We encourage all patients who are employed prior to initiation of dialysis to continue. Should a patient be unable to continue working in the same position, we make referrals to local or state vocational rehabilitation agencies to make appropriate assessments, and help the patient find rewarding employment.

In 1991, the American Disabilities Act (ADA) passed as legislation to protect those individuals who are disabled or impaired. Employers can no longer discriminate due to anyone’s impairment or disability. Renal Social Workers serve as patient advocates to ensure each individual’s rights and to identify injustices in the system.

Should you have any concerns regarding any of the above issues, see your renal social worker. There is no goal or answer that does not become altered with time, experience, or evolution. Your renal social worker understands, and can help.

One of the primary concerns felt by dialysis patients is the ability to experience the greatest quality of life. This especially pertains to participation in activities. Depending on the age of the dialysis patient, age-appropriate activity ranges anywhere from participation in physical sports, to the care-giving role of watching grandchildren. An individual’s perception of level of activity is entirely personal. Our focus is upon individuals who feel that renal failure prohibits their participation in activities of preference.

Many dialysis patients feel that the time spent during treatment (inclusive of travel and time waiting in the reception area) takes away from their time to enjoy other activities. We promote methods of time management in order to prioritize preferred activities. This way, patients can still feel that they have the freedom to join others and feel a part of special occasions and events. For example, we assist patients with schedule changes, to allow for attendance at a special function (e.g., a wedding, reunion, etc.) We also try to help reframe a patient’s perspective of time (planning activities specifically around the dialysis schedule.)

Most dialysis recipients, who have participated in activities prior to their renal failure, find they are able to resume those activities. However, in some instances, people may find that they need to limit their activities if physical exertion may have any impact upon the successful usage of their access.

Although most of the dialysis patients attend family and social functions, a very normal feeling experienced by patients can be apprehension due to concern about renal diet and fluid intake. Many people find that watching loved ones enjoy plentiful food and drink to be difficult, while patients must always count and measure. Sometimes the temptation is so great that individuals will abstain from family and social events. At times, people can begin to feel isolated.

As renal social workers, we explore and identify these feelings with dialysis patients. We offer assurance that what they are feeling is absolutely normal and that they are in good company with many other people, who are also restricted in their lifestyles. We also point out that people with healthy renal function must also moderate their lifestyle for good health.

Dialysis patients often complain of not being able to sleep adequately at night. Many reasons may be found for this experience.

Some dialysis patients take naps during the day, or may limit activity because of their treatment. Thus, when it is time to go to bed, patients may feel that they are not tired enough to sleep through the night. Sometimes they complain that their sleep is erratic, or broken (waking up in the middle of the night.)

Early morning shift patients (6:00 a.m. shift) may have trouble sleeping because they are anxious about arriving on time at the dialysis unit. This indicates sleep disruption due to anxiety. Often, patients who remain anxious about their arrival time may sleep intermittently throughout the remainder of the day. This can interfere with their activity level. On the other hand, some patients remain awake at night deliberately, in order to be able to sleep throughout their treatment the following day. In this manner, patients have found that their anxiety about the treatment is reduced.

Sometimes, sleep disturbances may have medical or emotional causes. Renal social workers will refer the patient to their nephrologist or psychiatrist (if related to a depression.)

Many of our patients worry about the cost of dialysis. However, the majority of our dialysis patients is working or has had a working history (now retired and receiving benefits through Social Security.) These individuals have access to Medicare coverage, or an insurance plan through (a) employment, or (b) a COBRA policy. Those without insurance are given assistance in applying for Medicare or State Medicaid, if eligible. We renal social workers assess every individual and assist them in application for benefits, as eligible.

Today’s society generally lends great focus to physical appearance. You can imagine the pressure of achieving "the perfect" weight, figure, skin texture, the most complete wardrobe. How we present ourselves to others holds great impact upon our self-image and confidence. Dialysis patients can easily feel uncomfortable or dissatisfied with their appearance due to location of the dialysis access.

For instance, a hemodialysis patient may feel that her distended veins may be unsightly (although in the eyes of her nephrologist, healthy and perfect!) In the case of peritoneal dialysis recipients, they may experience greater self-consciousness due to the location of the catheter in the peritoneum. Concealment may be difficult at times, especially in warmer weather. Further, many patients express that they feel bloated, and uncomfortable with their condition and the physical aspect of the treatment.

It is important to deal with feelings of discouragement or discomfort. That access you may deem unsightly or frightening is your lifesource. Also, you can try to highlight areas you consider attractive about yourself – whether your features, style of dress, or your personality. It is imperative to focus upon the positive feelings you have for yourself. What better fashion statement than letting everyone know how good you feel and that you deserve it!

Dialysis patients have a greater tendency to experience more than one, if not multiple, admissions to the hospital. Access failure is often the primary cause of admissions to the hospital, combined with co-morbid conditions requiring acute medical care. Individuals who are managing other conditions such as diabetes mellitus, cardiomyopathy, congestive heart failure, and hypertension may find themselves admitted time and again for medical maintenance. Sometimes these conditions influence each other, which can make length of stay for the dialysis patient difficult and lengthy.

Social service tries to intervene on behalf of the patient and family members to assess immediate needs. We provide supportive services (e.g., counseling, and crisis intervention) caused by the admission. Renal social workers collaborate with inpatient social workers for the purpose of beneficial discharge planning with the patient - whether to a subacute rehabilitation facility, or to the patient’s home. Here, the social worker’s role is to assist the patient and family with adjustment and fulfillment of concrete/emotional needs during this time of medical crisis.

Almost every individual who finds him or herself initiating dialysis treatments expresses fear about the time element imposed upon their routine. This is surpassed by the concern for "How am I going to get to dialysis?" Transportation is most likely the first concern of every new patient. New to treatment, patients may feel that they are unable to drive themselves. Or, if they are dependent upon family members, they may feel that asking for transportation three days every week is a tremendous burden. Others may have no one to drive consistently, and may be unable to afford to pay privately.

Social workers assess each patient individually for transportation needs. They utilize community and town resources (for example, county agencies for special transportation, town vans, etc.) An important part of the assessment process is the evaluation for financial coverage, such as Medicaid or other state/county-based benefits for the provision of medical transportation. Keep in mind – Medicare is very stringent about coverage for transportation – only in dire cases of medical necessity. The patient must medically be required to receive stretcher transportation for a specific medical condition. If you think your family member has a need for this mode of transport (especially when preparing for discharge from the hospital, please see your renal social worker for assistance.

Time is a major concern for the dialysis patient. More often than not, the dialysis patient feels that his/her time no longer belongs to him/her. This valuable time is spent in a hospital setting, in transit from home to facility, or sitting patiently in the waiting room. The average amount of time spent by any hemodialysis patient (given a typical three-to-four-hour treatment) can range from five to seven hours with traffic patterns, waiting times, holding sites post-treatment, and the like.

With respect to peritoneal dialysis patients, though in their own home environment, must face at least four half-hour exchanges per day, seven days per week. Those individuals who receive treatment via the Home Choice Cycler must regulate their sleeping hours to benefit from treatment. Often, patients complain that they can no longer engage in meaningful activities due to time constraints related to treatment. People may find that they avoid social activities, vacations, favorite hobbies, or work, because they feel that they cannot manage the schedule in addition to dialysis.

Renal social workers try to assist patients in recognizing areas which can be strengthened, or highlighted, in order to maximize independent function and quality of life. We encourage patients to utilize the time during dialysis as "their own time." For example, if a patient likes to read, watch television, we encourage pursuit of these activities during treatment (for either PD or hemodialysis.) Others may enjoy knitting, crochet, or other such manual activities, which can be performed within the confines of the dialysis chair. Eventually, patients find that dialysis becomes part of their weekly schedule. Time can be found (whether in dialysis or outside of the center) for the pursuit of other meaningful activities – or "me time," which is absolutely necessary for every individual to enjoy!

Clothing which is comfortable, the least restrictive around the site of an individual patient’s access is considered to be the rule of thumb for the dialysis population. Generally, patients do not wear fabrics, which are difficult to launder. However, each individual has his/her own taste in dressing: some patients are very self-conscious, and may wish to dress to conceal themselves as much as possible. Others prefer a flamboyant style, as this helps them feel attractive and confident. This also reduces the feeling of "being a patient." Some individuals feel uncomfortable with the look of their accesses, and may try to cover them. And others yet feel no discomfort, and may not make any attempt to conceal them (e.g., someone with an AVG may wear sleeveless shirts.) How a patient decides to dress is up to the individual’s preference, with respect to the protection of the access.

All dialysis patients must come to terms with the structure and limitations of the renal treatment, schedule and diet. Patients generally associate compliance with restriction, the turning over of control to an outside healthcare provider, and self-denial. Renal team members try to collaborate with the dialysis patient, as compliance to treatment generally leads to the following outcomes:

• Fewer problems experienced during treatment (e.g., cramping)
• Lower weight gains between treatments
• Ability to maintain physical stamina with well-controlled blood levels
• Greater feelings of self-control through active moderation of lifestyle
• Increased likelihood of longevity and quality of life

The renal social worker, as part of the renal professional team, helps patients deal with compliance by encouraging healthful behavior and by highlighting the positive benefits of a well-moderated lifestyle. Frequently, newer patients benefit, too, by talking with patients who have received treatment for a long time. Though patients may become frustrated with delayed gratification of their efforts, this frustration is normal, and in time, the compliant patient can make adjustments to best suit his/her lifestyle and health management.

The renal social worker assumes many roles within the renal dialysis unit. He/she must possess a master’s degree in social work from an accredited academic institution. He/she must also obtain licensure through that professional state board of social work examiners in order to be licensed to render professional services. Further, the social worker must become very familiar with resources and referral services on local, state, and federal levels. With this training as prerequisite, the social worker assesses and evaluates a patient’s background, family, support system, and access to fair and adequate resources. The ultimate goal is the assimilation of the patient into the renal dialysis lifestyle, with the greatest access to resources which will promote the highest level of function for a patient, maximize ability to negotiate his/her environment, and to expand the interfamilial and external support systems to aid adjustment of the well-family members as well as the patient himself/herself. This promotion of an optimal level of independent function is a conjoint effort; the renal social worker does not act alone, but instead as part of a vital multidisciplinary team effort geared towards patient wellness.

Prior to the initiation of dialysis, healthcare providers are aware that the prospective patient has evolved his/her own way of managing his/her life - they have been employed, raised families, and have managed their own financial affairs/insurance coverage. An individual typically feels symptomatic by the time he/she initiates treatment, and frequently this stage is one of crisis. The renal social worker is interested in how this individual managed crises before, and how they utilized internal coping mechanisms as well as external supports in order to compensate for losses and regain strength. The biopsychosocial assessment conducted by the renal social worker highlights the patient’s and family’s strengths, attitudes towards healthcare involvement, and maps out the family’s response to intervention. Exploration of concrete needs, (e.g., housing, prescription plans through the state, etc.) may fortify the patient’s ability to resolve basic standard of living issues. Resolution of these issues of basic needs often results in new goal identification and strengthened resolve to explore emotional issues previously ignored due to dire financial necessity.

The biopsychosocial assessment is necessary in the identification of the needs of well-family members. Though the identified patient is the dialysis recipient, family members must also adapt themselves to the changing needs of their loved one. They must assist with financial management, provide transportation, or receive training to assist with the administration of medications, to name a few responsibilities. Here, systems theory is demonstrated, as the well-family members have to adjust their routines, suppress their own needs, in order to provide for the one undergoing treatment. Conflict within families can arise as the roles and function of the family is radically altered. Here, family support, validation of each member’s needs within the family unit, and resources aimed at guiding these changes are absolutely necessary in order for the family to maintain a healthy balance, and promote its own interdependence. Frequent family meetings, counseling sessions, follow-up calls, and evaluation for appropriate referral sources help the well-family members, and the patient recognize the need to help each other as a self-contained system. This approach also alleviates the guilt, which may be experienced by the patient who may feel that his/her condition is hindering the growth of his/her family members.

Patients and families also find that they may need additional help from community resources in order to adapt to the dialysis lifestyle, and to promote the ability of the family to sustain itself as an independent entity. Renal social workers explore identified needs in the home (tutoring for children, daycare services, home health services or Meals on Wheels services for the homebound, assistance with AFDC for those with dependent children, general assistance for those who have no means of income, to name a few.) If the family cannot thrive economically, socially, or lends itself to ostracization if too closed as a system, the patient can suffer greatly and may experience complications hindering his/her lifestyle. The family may experience a continuous state of disequilibrium, and thus thwart the helping process. Renal social workers assess the family system as a unit from the inception of treatment in order to anticipate issues that may arise. They identify areas needing to be strengthened, and make available resources at the local, state and federal level which will alleviate overwork and burden as a family shifts to compensate for the changes made by chronic illness.

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