Dialysis, as a means of prolonging life for an indefinite period, took on new psychosocial implications on July 1, 1973, when the Medicare end-stage renal disease (ESRD) program (Public Law 92-603, Section 2991) became effective in the U.S. The Medicare act made major financial coverage available to 90% of patients with renal failure, without regard for age or complicating disease processes.
Psychosocial issues were recognized by medical and mental health professionals as impediments to adjustment and satisfactory quality of life for patients with chronic kidney disease (CKD) long before Medicare entered the dialysis picture. This became even more apparent when federally supported dialysis treatment was determined to be the right of all persons with kidney failure. Some of the psychosocial factors involved in dialysis therapy are changes in an individual’s work and family situation, financial concerns, and the stress of living with a life-challenging illness.
What are the psychologic consequences of long-term dialysis?
Dialysis may have a major impact on a patient’s psychosocial status. Some patients have a gradual decline in quality of life, particularly as medical complications become more severe. This can lead to depression and an increased risk of suicide. Other patients experience an excellent quality of life and are highly rehabilitated and productive. What distinguishes these two patient groups remains uncertain. Close attention to psychosocial adaptation, with psychiatric intervention and counseling when needed, can help patients to optimize the quality of their lives while on dialysis.
Is it possible to predict how a patient will react to maintenance hemodialysis?
Little work has been done to help healthcare professionals predict how patients will react to the multiple changes and stresses associated with life on dialysis. Most studies have involved small numbers of patients and showed little agreement regarding predictive parameters. An individual’s method of coping with past life stresses remains the best single indicator of his or her adaptability to daily life with dialysis. Frustration tolerance, aggression, denial of the sick role, and obsessive-compulsive characteristics are personality traits that can be evaluated and used to help predict a patient’s potential adjustment to dialysis.
An evaluation of the patient’s coping methods is conducted in part by a mental health professional (usually a clinical social worker) on the dialysis treatment team. An in-depth psychosocial evaluation that includes interviews with both the patient and the family is conducted by the social worker at the initiation of chronic dialysis treatment. Based on this evaluation, a treatment plan is formulated to include psychosocial counseling and community resource referrals that can enhance the patient’s ability to cope. Often the social worker can provide support and reassurance to patient and family as well as help alleviate pressing resource needs by assisting with financial and insurance problems.
What stages of adjustment to dialysis might a patient with chronic kidney disease experience?
When the onset of CKD is gradual, the patient has time to adjust to the idea of dialysis and to make well-informed treatment choices. The initial response to dialysis itself can be one of relief, especially if the patient has been feeling ill for a period of time. Unfortunately, some patients delay beginning dialysis until they are quite ill and then may require the initiation of dialysis on an emergency, hospitalized basis.
When the onset of CKD is sudden, there can be an acute crisis phase of adjustment, often marked by feelings of shock, disbelief, desperation, and depression. In such cases, a crisis intervention approach by a trained mental health professional is indicated. Three stages of patient adjustment to dialysis have been identified:
• The “honeymoon” period is defined as a patient’s initial response to dialysis, which can last from a few weeks to six months or more. Usually this phase is one of physical and psychologic improvement and is accompanied by renewed feelings of hope and confidence. During the honeymoon period, patients may respond to staff in a positive and grateful manner. This does not mean that patients do not also experience periods of anxiety and depression but rather that they may view dialysis in a more positive way overall because they feel better than they did before the initiation of dialysis.
• The period of disenchantment and discouragement is marked by reduced feelings of confidence and hope and can last from 3 to 12 months. This phase is usually triggered when an individual returns to some previous routine or employment and is forced to confront the limitations that dialysis places on these activities. During this time, feelings of sadness and helplessness may arise.
• The period of long-term adaptation is characterized by the patient’s arrival at some degree of acceptance of the limitations, shortcomings, and complications that dialysis brings into his or her life. Patients can experience long periods of contentment alternating with episodes of depression. Adaptation often can be facilitated by a return to some form of meaningful work or by settling down to doing little or no work at all. Incorporation of diet and activity restrictions and the dialysis procedure into the daily lifestyle is part of long-term adaptation.
These periods of adjustment are presented as general guidelines only. Not all researchers and practitioners agree about this sequence of phases. There is not always a linear progression from one stage to another, and for individual patients the various stages may be much briefer or much longer than indicated above. Further, patients may shift back and forth from stage to stage for a variety of reasons, including medical complications.
How can the quality of life of a patient on dialysis be evaluated?
Quality of life is a phrase that is sometimes used interchangeably with such terms as life satisfaction, well-being, and morale. Usually, quality of life is defined as encompassing major areas of functioning in the physical, psychological, and social realms. Further, feelings about this issue are relative perceptions for each individual, and any attempt to evaluate quality of life must take into account the significance of these highly subjective perceptions. An intolerable situation for one patient may not be intolerable for another.
Several instruments that measure quality of life for research purposes may be used for clinical assessment as well. In addition to using formal measures, dialysis personnel should provide patients with opportunities to talk about their own feelings and perceptions regarding their quality of life.
What can be done to enhance the quality of life for dialysis patients and their families?
Evaluation and planning for psychosocial intervention should begin before the patient actually needs dialysis. Patients and their families should be educated about dialysis and be encouraged to participate actively in deciding various aspects of the treatment program, including the type of dialysis and the need for access placement. Evaluation of the type of dialysis to be used for a patient should include an assessment of the challenges he or she is facing, as well as personal, family, work, and social considerations. It is essential for staff to identify individuals who are at great risk for psychosocial dysfunction because early introduction of vocational and psychotherapeutic counseling (for the patient or family) can increase the patient’s rehabilitation potential and improve his or her quality of life.
After a patient has begun dialysis, the dialysis staff needs to institute interventions to maximize the positive effects and minimize the negative effects of dialysis on the patient’s quality of life. Such interventions might include counseling by the dialysis social worker or other mental health professional that is familiar with the dynamics of CKD and the dialysis process.
What are common sources of stress for dialysis patients?
Patients on maintenance dialysis are confronted with severe limitations and demands on themselves and their families. They must contend with changes in family relationships, such as role reversal and deteriorating sexual responsiveness, and with accompanying feelings of guilt, depression, and loss. It is suggested that 20% to 30% of all maintenance dialysis patients have significant depressive symptoms (Chilcot et al., 2010). Depression has been found to have profound effects on the overall health and well-being of patients with a chronic disease. The threat of reduced job responsibility or unemployment can contribute to feelings of worthlessness and loss of self-esteem. Many patients experience conflict between the need to be dependent on a machine and on other people and the desire to remain independent. They may feel that they have relinquished control of their lives to the dialysis team. Underlying many of these feelings is the basic fear of dying. The patient’s dependence on the dialysis machine can be a constant reminder that he or she has been rescued from death.
How can the dialysis team assist patients and families in coping when dialysis becomes necessary?
Dialysis patients and family members who regard renal failure and the need for dialysis as a loss may grieve over that loss. Dialysis personnel should be familiar with the issues of grief and the grieving process and be prepared to provide appropriate intervention or call upon a resource person, such as a psychiatric nurse, social worker, psychologist, or psychiatrist, as needed. If members of the dialysis team are able to recognize periods of exceptional stress and use appropriate crisis intervention approaches, they can help patients cope with such periods and prevent major adjustment problems.
Patients who are unable to accept the restrictions imposed upon them by dialysis may become depressed and unable or unwilling to adhere to their dialysis regimens. When this occurs, the diminished quality of life and increased potential for death should be addressed by prompt recognition and social work or psychotherapeutic intervention.
What are some psychological reactions and common coping mechanisms of patients on maintenance dialysis?
Anxiety is the initial reaction for most patients and families faced with the prospect of life on dialysis. Such anxiety is entirely normal, and the dialysis staff needs to reassure patients that this is the case.
Depression may occur early in the treatment process. Again, this is a rational reaction to the prospect of a limited and risky life that will require totally different objectives than would have been planned otherwise.
Hostility and anger are frequent reactions of patients on dialysis. Hostility toward dialysis personnel and the medical regimen is actually a reaction to the limitations imposed by the disease, but this anger is displaced to the treatment staff and procedure.
A difference of opinion exists as to the role that the denial mechanism plays in patients who have become stabilized on dialysis. To staff involved in the primary care of these patients, denial seems to be a common defense that allows patients to cope with the realities of the situation while regarding it as not a part of their real selves. Denial used in this way can be very useful for the patient because it shuts out negative aspects of the illness. However, denial can be carried to extremes, subverting medical management, and the result can be disastrous.
Do emotional factors affect the patient’s long-term survival?
Successful life with a dialysis regimen requires a willingness and ability to adhere to dietary and fluid restrictions, medication regimens, and dialysis procedures. Most people adjust to these restrictions and show great responsibility.
In what ways does nonadherent behavior affect the patient’s physical condition?
Nonadherent behavior can be manifested in a number of ways, including the following:
• Nonadherence to the prescribed diet is a manifestation of the denial mechanism gone astray. This can contribute to increased morbidity and even to mortality.
• Ingestion of excess fluid represents denial of kidney failure with potentially harmful results.
• Inadequate care of vascular or peritoneal access is sometimes a problem. A clotted or infected vascular access may not be discovered until it is time for a dialysis treatment. With peritoneal dialysis, use of an improper technique may lead to infection.
• Manipulation of treatment time can be another manifestation of nonadherent behavior. Skipping treatments and shortening treatment times are examples of this behavior.
Such behaviors can contribute to malnutrition, neuropathy, bone disease, cardiac failure, and the like. If these behaviors persist, they result in physical deterioration and, in extreme cases, in death—a form of passive suicide.
How can such adverse behaviors be countered?
Patients sometimes resent consultation with a psychiatrist. In such cases, the patient may be defensive and unwilling to admit that a problem exists or that problems may have an emotional basis. Even if the psychiatrist is recognized as a member of the treatment team, there is a tendency to avoid such counsel. Group sessions that involve patients as well as family members and are guided by a skilled and accepted social worker or psychiatric nurse (using the psychiatrist as a resource person) may be a more readily accepted form of help. Within such a group setting, ventilation, sharing of problems, and discussions with peers can help resolve many problems. The psychiatrist, psychiatric nurse, or social worker can also help medical and other personnel deal with a patient’s resistant behaviors. These professionals can offer reassurance and suggest approaches to help other members of the dialysis team assist the patient in handling the challenges of dialysis.
What emotional problems are commonly seen in family members?
Anxiety is a common and normal response in family members, particularly when the patient first begins dialysis. With the passage of time, other stresses may bring added reactions. The continued drain on financial resources and the need for role changes within the family may create additional problems and resentment. Often a patient on dialysis may become increasingly dependent, demanding, and irascible. Resenting the loss of a positive self-image and self-esteem, either real or imagined, the patient may be antagonistic toward the rest of the family. Family members, in turn, may become hostile toward the patient and then experience guilt for having these feelings.
Nurses and other dialysis personnel can provide opportunities for family members to express hostility and anxiety through the use of active listening techniques. Staff can offer reassurance that these are normal reactions. Furthermore, other team members may act as liaisons with the psychiatrist or social worker in developing a realistic plan to help the patient and family resolve any problems that arise.
What are some of the physical problems that can adversely affect the psychosocial adjustment of dialysis patients?
Insomnia, chronic pruritus, neuropathy symptoms, muscle cramps, and bone and joint pain are some of the most commonly identified physical problems that contribute to a diminished quality of life for patients on dialysis. Ongoing assessment of the physiological response to CKD and dialysis therapy is essential. In many cases, medical management can alleviate the physical problems, enhancing the patient’s psychological adjustment and improving his or her quality of life. Some patients need to be encouraged to report physical symptoms because they may otherwise assume that nothing can be done about them.
How does the dialysis procedure itself affect the psychosocial adjustment of dialysis patients?
The time commitment involved is probably the single aspect of the dialysis regimen that exercises the largest influence on a patient’s adjustment to treatment. The time demand may interfere with the patient’s ability to perform activities of daily living, resulting in loss of independence and, ultimately, lowered self-esteem and depression. Dialysis personnel need to work with the patient to design the least restrictive regimen possible. Encouraging the patient to perform self-care activities and to maintain some degree of independence will sustain a more positive psychosocial adjustment.
How does social support influence the psychosocial adjustment of patients on dialysis?
Social support, in terms of both quantity and quality, has been associated with better levels of psychologic adjustment in persons living with any chronic illness. Family members are usually the greatest source of social support for a patient. However, to maintain their ability to support the patient, family members may need help from dialysis personnel. In addition, patients and family members should be encouraged to continue to participate in social and leisure activities both within and beyond the family. The dialysis social worker can provide referrals to patient and family support groups and community resources for socialization. Caregiver groups, peer support, and senior citizen centers can be included as appropriate.
What type of relationship should exist between the dialysis patient and the nurse or technician?
It is not uncommon for a dependence to develop between dialysis personnel and patients. This type of relationship may be very satisfying to the nurse or technician and may fulfill a desire to be needed. However, an excessively close relationship may cause the healthcare professional to exercise faulty judgment, which can be detrimental to the patient. Patients need to be encouraged to do things for themselves, whenever possible, to preserve and promote a sense of independence.
It is best if one staff member can be responsible for working with a given patient and his or her family. This helps to prevent problems that can be created by inconsistent responses to questions. Due to anxiety, patients and family members tend to ask slightly different versions of questions of everyone. The result can be ambiguity and chaos. Questions should be answered consistently, accurately, and honestly, and this is best accomplished if one team member serves as the primary information source for each patient and his or her family.
What are professional boundaries?
Professional boundaries are the limitations that healthcare providers impose on themselves to maintain a safe and comfortable therapeutic relationship with their patients. The National Council of State Boards of Nursing (1996) defines professional boundaries as “the spaces between the nurse’s power and the client’s vulnerability.” The nurse or dialysis technician is in the position of power because he or she has the ability to perform the life-sustaining treatments that the patient requires for survival. The dialysis staff typically is involved with the care of the patient three days a week over the duration of many years. This situation lends itself to the potential development of personal relationships between patients and nurses or patients and technicians. Although most relationships are therapeutic, healthcare personnel sometimes become overly involved with the patient’s needs. These boundary crossings or violations may be interpreted as inappropriate by an employer or state board of nursing.
It is never appropriate to have anything other than a professional relationship with a patient. Neither a business relationship nor a personal relationship should be established between a patient and staff member. Healthcare professionals should not spend time with patients outside of the workplace or socialize with them. Intimate relationships with a patient are never appropriate; any type of sexual relationship with a patient is misconduct and a serious violation of the Nurse Practice Acts of most states. It is the responsibility of the nurse or technician to ensure that professional boundaries are maintained. The patient is always considered vulnerable if litigation should occur as the result of an inappropriate relationship. Gifts, monetary or otherwise, should never be accepted from a patient or family member.
The healthcare professional is responsible for maintaining professional boundaries. A good rule to determine the appropriateness of a relationship is to ask if you would establish the same relationship or engage in the same activities or behaviors with every patient in the clinic. If the answer is no, the chances are that the relationship, activities, or behaviors constitute a boundary violation.
Do patients have unrealistic expectations of dialysis therapy?
It is not uncommon for patients to expect a greater degree of curative capability than dialysis can actually provide. Dialysis provides a lifesaving therapy, but it does not cure the disease. The patient and his or her family still must live and cope with a chronic illness.
What is the purpose of predialysis education for the patient with chronic kidney disease?
Education programs are in vogue and can help to ease the CKD patient’s transition through all phases of the disease. Predialysis education is known to lower stress for both the patient and the family, improve mortality and morbidity, enhance self-care and decision making, play a role in the continuation of employment, and allow for more informed decision making when replacement therapy must finally be initiated. The 2006 Kidney Disease Outcomes Quality Initiative (KDOQI) Clinical Practice Guidelines for Hemodialysis Adequacy recommend planning for kidney failure when the patient reaches CKD stage 4. Education about kidney failure and options for its treatment should be provided to patients at that time. Early education allows the patient and family to weigh their treatment options and begin to make decisions prior to an imminent situation in which dialysis is urgently needed. Some education programs are offered to patients as early as CKD stage 3.
The American Association of Kidney Patients (AAKP) has developed several predialysis education programs to assist those with CKD. The AAKP has teamed up with Baxter Healthcare to establish the Stay in Touch program, which offers educational mailings based on patients’ current needs, a toll-free hotline, and an informational website. The AAKP also offers a program called Kidney Beginnings: Live, a free educational program to educate patients about the basics of kidney disease and care. Fresenius Medical Care North America offers Treatment Options Program, which provides classroom-style education on the risks and benefits of all available treatment options. Patients have an opportunity to interact with a healthcare expert and to ask questions regarding all stages of CKD. The National Kidney Foundation (NKF) has developed an extensive patient education program in response to the new Centers for Medicare & Medicaid Services (CMS) guidelines for reimbursement under the Medicare Improvements for Patients and Providers Act (MIPPA) of 2008. The program is called Your Treatment, Your Choice and is delivered by qualified professionals including physicians, physician assistants, nurse practitioners, and clinical nurse specialists. Kidney School, an online and self-management learning program, is also available to patients with CKD stages 3 to 5. Its materials were developed at the seventh- through ninth-grade reading level and contain graphics and animations to keep the learner engaged.
The new CMS guidelines state that patients have the right to be informed about and participate in, if desired, all aspects of their care. They must also be informed about all treatment modalities and all aspects of their care, such as diet, blood tests, access options, medications, rights, responsibilities, and rehabilitation. Most education programs help to address these required topics and provide the patient with additional written materials and resources.
How does predialysis education help both the patient and family?
Patients and their families need to be well informed and have a solid understanding of the disease process and the necessary treatment. A well-planned and well-executed patient education program is a vital aspect of the care of any person with CKD.
Patient and family group meetings, held at regular intervals and guided by a qualified team member, can provide a great deal of support and problem solving of a self-help nature. Patient care conferences involving all members of the dialysis team should be held regularly to keep all personnel current on patient problems and how they are being approached. Otherwise, with a large number of patients, the effort can become fragmented.
Is the sexual dysfunction experienced by many dialysis patients emotional?
Sexual dysfunction in dialysis patients involves both emotional and organic factors. Organic elements that contribute to decreased sexual functioning can include severe anemia, impaired testosterone and other hormone levels, and increased parathyroid hormone level. These conditions can lead to reduced fertility and libido. Medications, particularly some antihypertensive agents, also may contribute to sexual dysfunction. In addition to these organic causes, depression also seems to be an important element in the sexual dysfunction of dialysis patients. Even with correction of anemia with erythropoietin, sexual dysfunction is still a major problem.
Both the patient and his or her partner need to be aware of the potential for sexual dysfunction and be provided with a framework for discussion about sexuality. In many cases, the nephrologist or mental health professional will need to initiate the discussion about sex, rather than expect patients to bring the topic up on their own. Together, the physician and social worker can provide a forum for discussion. Counseling may be helpful in some cases, and it should be possible for a couple to work out acceptable alternatives.
What degree of rehabilitation may be anticipated for dialysis patients?
Rehabilitation can be defined in both broad and narrow terms. Using a liberal definition, rehabilitation may be considered successful if an individual is able to fulfill family role responsibilities and engage in meaningful activities.
When defined in the narrow sense, meaning the return to a prior level of functioning, dialysis patients may have limited rehabilitation potential. Homemakers and students frequently are able to resume their customary activity schedules with minor limitations. The growing number of CKD patients with concurrent illnesses and accompanying sensory and motor deficits has resulted in a decrease in the proportion of patients able to return fully to their previous levels of functioning. With improved dialysis techniques and the correction of anemia, it is increasingly realistic for CKD patients on maintenance dialysis to consider returning to some type of work after commencing dialysis.
How can a dialysis patient’s rehabilitation potential be enhanced?
In recent years there has been an increased focus on rehabilitation in the dialysis population. The dialysis social worker can refer patients to state vocational rehabilitation programs that can be helpful in assessing the patient’s potential and identifying alternative sources of employment. These programs may include an educational component, with referral to job training or educational programs within the community college system or at local universities. In some cases, financial assistance is available to low-income patients.
What is an advance directive?
An advance directive (AD) is a written document that specifies in advance what kind of medical treatments an individual wants or does not want in the event of an incapacitating condition. In 1991 the Patient Self-Determination Act (Danforth Bill: Public Law 101-508) went into effect. The law applies to most healthcare organizations and providers in the U.S. It requires that patients be given information concerning their legal right to make decisions about the medical care and treatment they are about to receive. An AD can be a durable power of attorney for healthcare or a living will. Requirements as to what needs to be specified vary from state to state. This is a difficult subject to discuss with anyone but it can be particularly difficult to explore with someone who is confronting a life-threatening illness. Often it is the role of the social worker to provide information about ADs to patients and their families, but all staff should be familiar with the law and issues surrounding ADs.
What about patients who decide to discontinue dialysis?
In planning the treatment regimen, the staff should include a comprehensive and open discussion about the options available to patients. The right not to begin dialysis and the right to withdraw from dialysis are among these options. Such decisions are based on the specific needs and desires of the individual patient, with consideration of his or her medical condition. A decision to discontinue or not to initiate dialysis is usually made in conjunction with family members, the physician, and other members of the dialysis team, including the chaplain and the psychiatrist. In general, older persons who have complications because of underlying illnesses are more likely to discontinue dialysis than are younger individuals. When a patient has elected to discontinue dialysis, members of the professional team need to provide supportive care with an emphasis on physical and emotional comfort.
In what ways can patients with chronic kidney disease achieve more control over their own situations?
Patients who previously led independent lives may be at increased risk for psychosocial difficulties with the onset of dialysis treatment. It is especially important that these individuals be given opportunities to participate in their treatment regimens as much as possible. Patients may feel a greater sense of control over their situations if they are encouraged to perform self-care dialysis in the hemodialysis unit or during home hemodialysis. Peritoneal dialysis can be a positive choice for patients with a need or desire for freedom from dialysis schedules. Self-care is a good option for most patients who are suffering from a lack of control and is becoming a more popular treatment option. Patients can become involved in various levels of care from setting up the machine and dialyzer, cannulating their own access, and monitoring their own treatment and alarms. This can be a bridge to the patient moving their treatment to nocturnal home hemodialysis or conventional home hemodialysis.
What is palliative care?
Palliative care is a bridge of hospice care that treats the patient earlier in the course of the illness or disease process. Palliative care deals with the physical, emotional, social, and spiritual pain associated with incurable, progressive illnesses. Patients’ needs are assessed throughout the course of illness and changes are made based on those needs, with a transition to hospice care when indicated. A core belief of hospice and palliative care is that the patient deserves to die pain-free and with dignity. Bereavement support is provided to the family for a period following the death of the patient. Palliative care should be discussed with any CKD patient who requires maintenance dialysis but opts to decline dialysis or transplantation, as well as with any patient who wishes to discontinue the current dialytic therapy. To be referred to the CMS for benefits, the patient must have a life expectancy of less than six months. The end-stage renal disease benefits will be covered when a patient withdraws from dialytic therapy or when a terminal disease will result in death in less than six months. The patient can continue to receive dialysis in the form of ultrafiltration to ease the symptoms of fluid overload should dialysis be discontinued.
What is hipaa and how does it affect the dialysis community?
HIPAA stands for the Health Insurance Portability and Accountability Act, which was enacted in 1996. New privacy regulations, which went into effect on April 14, 2003, protect patients’ medical records and other health information that might be provided to insurance groups, doctors, hospitals, and other healthcare providers. The new privacy regulations, developed by the Department of Health and Human Services, ensure privacy for patients by limiting the ways in which health plans, hospitals, and other healthcare providers can use a patient’s personal medical information. Any identifiable health information that is on paper, in computers, or communicated orally is protected under the new law.