The Trauma of Dialysis Initiation

As clinicians, we are often perplexed by the chaotic behaviors of patients and families. These occur with greater frequency at transition points, most significantly at the time of dialysis initiation. I would like to present a brief case to illustrate several important points that highlight some of these traumatic elements. Previously, a 48-year-old nurse with polycystic kidney disease was seen in the emergency department with uremic symptoms and a serum creatinine of 950 μmol/L (10.7 mg/dl). She had attended the predialysis clinic sporadically, with no visits during the previous 6 months. On an urgent basis, she is initiated on thrice weekly hemodialysis therapy via a hastily placed internal jugular vein catheter. After resolution of her physical symptoms, she is deemed to be an ideal candidate for nocturnal home hemodialysis. With her clinical background, she learns the technique quickly and is discharged home, with a follow-up appointment booked for 6 weeks hence. Her adherence to the therapy at home begins to unravel rapidly. She balks at integrating the treatment into her everyday life, reducing the frequency and the length of her dialysis sessions. She shuns her husband’s participation in her treatment; hence, she decides to dialyze in another room, during the day, while he is at work. She pathologizes her son’s mild polycystic kidney disease condition, using it to forgo her own medical care. At other times, she becomes inexplicably confused, forgetting her well learned treatment procedures. At this point, she is asked to return to the home dialysis unit thrice weekly to undertake her dialysis treatments. Conversations with her primary home dialysis nurse and a nephrologist with psychotherapy experience reveal the trauma of a multigenerational illness, appreciated as a stigma placed on the family generations ago, with affected members dealing with shame by self-alienation and secrecy (Figure 1). Although the alienating stigma of illness is usually experienced by most patients, not just those with inherited diseases, her sense of shame is more profound and persuasive. She shares that, at the age of 19 years old, she did not inform her parents of her urologic surgery until after the procedure, when she discovered that she would be staying in the hospital for 3 days to recuperate. As a child, she was exposed to numerous anxieties associated with dialysis and transplant therapies and the severe intercurrent illnesses accompanying them, all of which were never processed. These suppressed feelings and memories have percolated to the surface, intermingling with her current anxieties and resulting in her disturbed illness navigation. In the containing environment of our transition care unit, with an equal focus on psychosocial and physical issues, she is able to manage her treatments unaided, while given the opportunity to converse, for the first time, about her unique situation and her acquired self-perspective. After 2 weeks, she is ready to resume her treatments at home, by herself, with the help of the sensitized home dialysis staff.Figure 1.: The trauma dynamics of chronic physical illness is illustrated. Initiation of dialysis may result in fragmented behavior and thoughts (left panel), which with time, become more cohesively organized (right panel). These images represent the extremes of a continuum. It is important to note that, even at the best of times, the behavior and thoughts of a patient with a serious medical illness never reach what we consider a normal state. Intercurrent illness, family dynamics, or other inapparent factors may lead to chaotic behavior at any time.Within nephrology, clinicians do not have a ready perspective, or even a language, with which to understand these turbulent transitions. The evolution to dialysis therapy is a fragmenting experience, disturbing previously unexamined internal and external cohesions. As we all struggle with becoming forced passengers within variably ailing bodies, we may be left feeling trapped, persecuted, and in despair. As patients descend into their own uniquely experienced form of vulnerability, colored by helplessness and hopelessness, different modes of thinking or behavior may emerge. These may be expressed as mood changes, such as anxiety or depression, or episodic panic attacks, communicating crippling death anxieties, which may overwhelm not just the patients but also the staff caring for them. Others may manifest dissociation of ailing or competent parts of the self or reveal perplexing states of withdrawal or unresponsiveness. All of these can be perceived as seemingly irrational behaviors, incongruent with previous levels of functioning or expected cognitive abilities.1 Externally, profound shifts in old and new interpersonal connections may distort one’s sense of self. The premises on which intimate relationships were built become warped.2 The tensions introduced by altered roles and innate anxieties, which now place more demands on others, may lead to interpersonal discord.3 The treatment itself introduces unique phenomena, with an individual connected to an inanimate dialysis machine that is not necessarily perceived as life sustaining. Very often, the machinery becomes personified, with surprisingly negative attributes. It is blamed for inducing cramps, low BP, or draining out of vital energy. The further anxieties induced by dependence on a machine result in patients terminating the treatments early or skipping them altogether.4 Fortunately, there is a temporal evolution, with the personality disruption shifting gradually over 4–12 weeks, coalescing into a woven personal narrative containing threads of past or very early traumas. This emerging narrative may seem illogical if appreciated using only a medical perspective but is a vital process for gathering and allaying paralyzing anxieties. This evolution is helped by enhanced external (social support) and internal (resiliency) resources.5 Thus, the lack of early supports at formative stages of childhood evolution tends to be much more impactful than any perceived socioeconomic disadvantages. Certainly, those who have successfully navigated earlier losses, such as the elderly, may be less traumatized.6 This positive shift becomes apparent as patients engage with the staff in an increasingly coherent fashion, with growing degrees of self-management. With time, patients will oscillate back and forth from lesser to greater degrees of psychologic disruption, often unrelated to any external events that we can appreciate, making the fluctuations inexplicable and thus, possibly disturbing to clinicians as well. This complex inner interplay may be manifested externally as a “difficult patient” or a diminution in or complete withdrawal from dialysis therapy. The more we are able to appreciate that, even at the best of times, there are inapparent disruptive internal forces, similar to a 2 year old’s temper tantrums, the more connected the patients will feel both externally with us and internally within themselves. Systemically, we need to begin shifting the culture of dialysis care delivery. Our current disease-focused and problem-oriented approach, centered on the body’s quantitative disturbances and mechanical processes, rarely acknowledges the needed supportive elements of these encounters. Dialysis transition units, focused on patients starting dialysis, can be structured with a model of care that envisions the individual coping with both emotional and physical turmoil: active participants in their care. These units, distinctly located and perhaps embedded within home dialysis units, should develop their own defined qualities of empathetic care on the basis of local resources and hierarchical support. For example, mandating the charting of a brief conversation with each patient during each treatment would enhance an informative dialogue, a supportive presence, and appreciation of a patient’s individuality. Focusing on these and other emotional support attributes of patient- and family-centered care has been identified as the strongest predictor of a positive patient experience.7 More importantly, these enhanced encounters promote not only emotional reintegration but also, self-care and increased home dialysis uptake.8–10 There are several steps in achieving this shift in care. The first component is recognition of its importance and an integration of that focus into every aspect of a patient and caregiver encounter. Research endeavors need to be implemented that focus on these qualitative topics using rigorous evidence-based methodologies. Validated psychometric measures, repeated over time in the same patients, will allow exploration of helpful interventions that can then be systematized on a broader basis.11 This enhanced perspective will ultimately allow us to not only “discover” the individual patient but also connect with our own vulnerabilities in all of their unique richness. At the end, this would highlight that we are all copassengers navigating the same turbulent storms and hoping for a sense of connectedness to provide that safe harbor. Disclosures None.