Psychological Aspects of Dialysis: A Case-Based Discussion

Abstract

End-stage renal disease is a life-threatening condition that requires the assessment and contribution of a multi-faceted treatment plan. The management of patients with kidney failure is at times very challenging and requires sudden adaptation to treat this devastating illness. The role of the professionals and the dialysis unit itself will be of invaluable help in assisting the adaptation to the disease that has impacted the life of the individual in so many spheres.

Introduction

End-stage renal disease requires the assessment and contribution of a multi-faceted treatment plan which includes the thrice weekly dialysis treatments and medical requirements, as well as a complete and continuous assessment of all the factors that may impinge upon the patient and his human dimensions. These include the biological, psychological, social, and spiritual issues that affect every person, relative to his or her own particular life situation.

Problem lays in the difficulty of forming an approach by the physician in charge, using the flexibility acquired to constantly inquire and display the necessary curiosity about all the factors that may be weighing on the treatment. This enables him or her to understand the nature of the ongoing dynamics that both patient and all the involved caregivers must understand and empathetically and compassionately deal with, to best manage and survive the illness.

Case Report

Mr. Lee is a 63-year old white male widower, and is a successful attorney and president of his firm. He has developed end-stage renal disease secondary to a severe ischemic cardio-myopathy. He has been very cooperative and compliant with his medical regimen. He has four hour treatment sessions, three days weekly, he never misses one or signs off early.

Despite his compliance, he has needed episodic brief stay admissions to the hospital for decompensated congestive heart failure. This occurs despite the fact that he adheres to his dietary and fluid restrictions, and takes his medication appropriately.

Lately, although he has maintained remarkable stamina and energy, it has become apparent to his nephrologist that he is exhibiting an increased sense of futility and quiet despair, as well as certain undertones of hopelessness. When this observation is addressed by his physician, Mr. Lee tries to minimize the issues involved, but soon his initial denial dissolves in tears of frustration and anguish. Further exploration reveals that his conflicts have become focused upon his relationship with his eldest daughter.

Mr. Lee’s eldest daughter is an attorney like her father, and works closely with him in the same firm. He has been her mentor, and has filled the void left by the sudden death of her mother five years earlier. Now Mr. Lee feels that he cannot fulfill or maintain this role because of his poor health, and even more importantly, he believes that he has become a source of worry to his beloved daughter.

Recently, during a visit with her father in the hospital, she displayed such intense distress and anxiety that Mr. Lee felt he had become a major handicap in his daughter’s life. The nephrologist recognizes that Mr. Lee is very depressed and feels guilty about not only not helping his daughter, but being the major source of her pain. He is experiencing moments of great vulnerability that are apparent to the nephrologist to the point that Mr. Lee is strongly considering discontinuing his dialysis treatments. He believes that after the initial pain and loss his daughter will feel, her life will be restored to a more peaceful existence. The attending nephrologist consulted with a psychiatrist colleague, and this resulted in a three-way dialogue between the patient, his daughter, and the nephrologist.

This dialogue helped Mr. Lee’s daughter recognize that the anxiety and anguish that her father’s health was causing was increased because of the sense of responsibility and duty he carried on his shoulders about her. She recognized sadly that her worry about her father was real worry about herself, and her fear that like her mother before him, he would die and leave her to suffer a great loss. She grew to understand that it was her time to develop the ability to deal more selflessly with her father and assume more responsibility.

Mr. Lee and his daughter accepted being under the care of the psychiatrist with which his physician had collaborated. This helped them both to understand each other’s pain and distress and cope with each other’s sense of loss. This lead to a sustained improvement and sense of peace and wellbeing in Mr. Lee, and together with the talk therapy, and the addition of sertraline, Mr. Lee was able to regain his balance and subsequently a new and more direct, open manner of communication developed between him and his daughter.

This is a situation where clearly the physician’s knowledge of this patient, coupled with the patient’s trust in his physician, turned around what could have been a disastrous decision into an occasion that, instead, brought those involved into a deeper, closer, more loving and trusting relationship, one that stood ready to deal with life’s future events. Mr. Lee gained the insight that real strength resides in dealing with issues rather than avoiding and surrendering to them.

The Patient

The variety of coping devices that individuals acquire will be of paramount importance in dictating the course of the illness and the compliance, adherence, and cooperation that will be required with a successful therapeutic alliance, according to Brennan.¹

An important factor in these coping devices is the degree of resiliency. By resiliency, we mean the ability of each individual to “stumble but not fall.” Resiliency is related to a concept of self-righting. Patients with disabilities have the ability to acquire or develop positive experiences in their lives, despite hardships they may have to endure. The human experience, according to Abraham Maslow,² is presented as having the resources of self-organizing, self-directing, and adaptation. The positive capacity allows the patients, with the help of the professional staff, after the initial disorganization brought about by the illness, to go from helplessness and depression to one of more resourcefulness and hopefulness.

The recognition of the limitations imposed by our forced dependency, by decreasing our autonomy, creates a lowering of our self esteem and self sufficiency which clinically can be translated to a state of chronic shame. Shame is a word which in itself has a shaming connotation. This appears as a response to our limitations of agency and autonomy. A caveat is that shaming called by its own name is shaming. We use shame as one of the affects described by Silvan Tomkins.³ It is the main modulator of interpersonal distance and connection with each other. It is important when discussing with the patient to use other words unless the patient is insightful about the concept. For example, it is more calming to say, “this is a difficult moment” or “this places abnormal stress on a person.”

End-stage renal disease requires the assessment and contribution of a multi-faceted treatment plan which includes the thrice weekly dialysis treatments and medical requirements, as well as a complete and continuous assessment of all the factors that may impinge upon the patient and his human dimensions.

Spectrum of Narcissism

The presence of narcissism as an investment in interest and concern on the self is a normal component of our personality. It is part of our survival. Although used at times pejoratively as a synonym for excessive preoccupation with the self, it was considered in psychoanalysis as part of the normal developmental stage in children.

The presence of this trait narcissism becomes dysfunctional when it impairs the social and interpersonal relationships and denies the validation and importance of others and their subjectivity with their own center of initiative. The narcissistic individual is immersed in a sense of uniqueness and grandiosity and has very little ability to recognize the existence of “other” minds. The “other” minds are mostly related as a means to increase the self esteem of the individual who needs continuous confirmation of his needs for perfection and power. The narcissistic individual has certain characteristics that are valuable to recognize.

Again, whether in the moment of imbalance as a chronic trait, all have in common three key elements:

1. Expectation of the perfect response by the “other;”

2. Expectation of complete control of the subjectivity of the “other;” and

3. Denial of the right of the other person to a different subjectivity.

When the narcissist does not receive the expected response from “the other,” narcissistic disequilibrium with shame develops, whether acknowledged or not. This shame is usually defended vigorously by anger, indifference, obliviousness, contempt, or devaluation of the “other.” The narcissistic individual needs validation of his special status and needs this with the intensity of an addict and the presence of a captive audience. This audience must reflect back the self perceived importance, entitlement, and superior status which are rightfully his own in his eyes. A chronic illness, because of the decrease in functionality and autonomy, creates the conditions for those so predisposed, to an increased need for medical attention. This is assessed clinically by the brittleness, irritability, and lack of resiliency in some of these chronic renal patients which can escalate to psychological or psychiatric episodes. The need for dialysis in these patients could become a sort of stigma or it may justify in their eyes their increased right to have their needs satisfied automatically.

Because of these issues, the management of patients with kidney failure is at times very challenging and requires sudden adaptation to treat this devastating illness. The more precarious the coping devices of the patients and their families, the more severe will be the impact and the course of treatment. Here the role of the professionals and the dialysis unit itself will be of invaluable help in assisting the adaptation to the disease that has impacted the life of the individual in so many spheres. These spheres include: income, mobility, employment, sexual function, family relations, community standing, and multiple medical complications.

Interaction Between Patient and Dialysis Personnel

The interaction between the patient and the dialysis staff deserve our multi-faceted full attention; from the physical characteristics of the surroundings, to the personal traits of the care givers, and the overall attitude of helpful respect and encouragement. The personal fit between the patient and his doctors is a key element in the difficult moments of this disease. The doctor is needed as much for his technical knowledge as for his humility and compassionate empathy. The professionals will find and seek validation of their own work in the recognition that as healers in such moments of anguish, they will have the opportunity to display compassion and knowledge, which will mutually validate the humanity of this endeavor. The professional in charge of directing the care and treatment of the dialysis patient should try to create a therapeutic alliance based on the mutual respect ad recognition of the humanness of the persons involved. These factors will include:

1. The patient’s perception of the problem,

2. The personality of the patient and his friends and loved ones;

3. The context and life events occurring within the patient at the time of the health encounter;

4. The nephrologist’s wisdom and knowledge of the field;

5. The personality of the physician;

6. The context and life events, professional and personal, happening to the physician at the time of interaction; and

7. The humble and realistic promise by the doctor of what can be safely delivered.

The Physician-Patient Relationship

This relationship should be considered within the context of both as subjects. The physician recognizes the “other” as a subject (with a subjectivity of his own) and the patient recognizes the physician (although perhaps more slowly) as a subject as well. When one has been related to as a subject, there is a feeling of being “felt” by the “other,” according to Siegel.⁴ There may be unexpected gaps or ruptures in these feelings, but there would always be a genuine desire to repair the disruption and recover the mutuality of the validation. Many studies show that physicians who have been perceived as authoritarian or contemptuous in their encounters with their patients, can precipitate severe crisis in the treatment, in some cases, with patients stopping their dialysis and preferring to die as an act of recovering their autonomy and agency that have been lost, even at the price of losing their lives. According to Gladwell.⁵ Perceiving each other as sentient subjects is a precondition for cooperation and development of the therapeutic alliance. The asymmetry in the relationship exists in the technical and professional realm. The physician possesses something that the patient needs, his skill, knowledge, and caring. The patient brings to the physician the opportunity to use his knowledge and skills and to recognize his humanity. It is not possible for this human condition to be slanted or diminished without objectification of the outcome with shame as its consequence.

Therapeutic Implications

Aaron Lazarre’s⁶ ideas in his Chapter, “Shame, Humiliation, and Stigma,” guide us in the medical interview. Every member of the care team has to be aware of other aspects not directly involved in the treatment per se, and their tremendous influence on the treatment and its acceptance. Patients usually feel frightened, anonymous, and dehumanized with the fear that their symptoms could be taken as complaints and that they do not have the right to communicate their opinions to the professionals directing their medical care. For that reason, the physicians need to work with the administrators of the clinics to prepare a nurturing milieu where the patients feel welcome and safe and respected as if they were long time members of a club.

Waiting For Care

It is important that the patient is seen and treated within a reasonable time of the expected appointments. Delays and interruptions give the patient the perception that their lives, their time, and their problems are of no importance to the medical staff. Humility and apology and correction of the inconvenience are the responsibility of the staff and should be acknowledged when there is a problem, whether or not it is due to unavoidable causes. This will reinforce to the patient that he or she is of the utmost importance.

Addressing the Patient

During the initial visits, the patient should be referred to by his complete title and name. If a degree of informality occurs or is considered, it should be asked respectfully by the professional if this satisfactory to the patient; other wise there is the potential for disrespect toward the patient without due regard for his preferences and feelings. In other words, it should be a respectful negotiation and dialogue, as should any future exchange that involves the human vulnerability of the patient.

Supporting the Patient’s Sense of Identity

Being ill has already taken the patient far away from being the person they were before the chronic illness. Becoming the patient in this type of chronic dialysis setting is depersonalizing. There are rules that forbid certain personal articles of clothing or jewelry and can have a devastating effect on the patient’s sense of identity. Patients try to counteract this loss of social and personal identity by bringing personal items or photographs to emphasize their non-patient roles. Privacy needs also require the utmost respect and attention and this delicate situation can best be dealt with by directly engaging the patient in a discussion about his or her wishes and needs.

The Attention to Privacy

Here, beyond Health Insurance Portability and Accountability Act (HIPPA),⁷ we have to recognize the shame that will always occur when something that one wished to be kept private is exposed. We cannot assume that something we see as a public medical event is not seen as such by the patient. Discussions concerning individual’s illnesses and personal medical information, or discussions about private family issues or monetary issues including insurance, or remarks about spiritual matters that should be dealt with in utmost privacy and kept private. This is challenging, since most of the dialysis procedures are done in open spaces and as such there is very limited natural privacy. There should be a policy that such matters are discussed before or after the treatments in a private office setting. This, too, is a most delicate issue, since privacy requirements can obstruct the often soothing friendly and familiar discussions and exchanges that can so humanize a medical setting.

Maintaining the Therapeutic Alliance

Professionals should be very aware of the communication and connection that occurs with patients. Each patient has his own perception of the problems and the nature and goals of the treatment. It is important to detect changes in style between the patient and staff, empathetically and respectfully, and ask for clarification if there has been any conflictive dialogue. Such an inquiry returns a message to the patient that what they say and express matters. Should harmoniousness be ruptured, it is imperative that an immediate attempt be made to repair the damage. Only with genuine respect, empathy, sensitivity, and availability, and a desire and commitment on both sides to promptly address concerns, can the therapeutic alliance be strengthened and maintained.

Biography

Walter F. Ricci, MD, is Clinical Professor of Psychiatry, University of Missouri - Kansas City (UMKC) School of Medicine, and Training and Supervising Psychoanalyst, Greater Kansas City Psychoanalytic Institute, Kansas City, Missouri. Harriet S. Langley, MD, MSMA member since 1980, is Clinical Assistant Professor of Medicine, UMKC School of Medicine, Chief, Section of Nephrology, Menorah Medical Center, Overland Park, Kansas. Kemal Sagduyu, MD, (above) is Professor of Psychiatry, UMKC School of Medicine.

Contact: feelbetter@gmail.com