When patients are first diagnosed with chronic kidney disease, or first initiate end-stage renal disease treatments (on dialysis) there are times when emotions can take center stage. In my book, Dialing in on DI-AL-Y-SIS, it is noted that “psychologists characterize the gateway into the world of chronic kidney disease – that can end up on dialysis – can create a physical and emotional crossroads.
A pertinent online article, attributed to the American Psychological Association (APA), acknowledges that dialysis requires a considerable amount of time and effort. … And yes, it does take a lot of time to adapt to the necessary changes in lifestyle.
Psychologists, in fact, provide a term – “rollercoaster emotions” – that pretty much describes what are going through the minds of those going on dialysis. Many are feeling hopeless, burdened by this albatross that is already wreaking havoc with their daily life. At other times, some patients may accept dialysis with a sigh of relief, sensing the upcoming treatments thankfully may extend their days on this earth.
Just this week, I noticed a post by noted Indiana kidney disease advocate James Myers that suggests that the emotional toll on CKD patients is underappreciated at times. The post points to an article written by Pam Harrison on medscape.com in reporting a study by Dr. Ann O’Hare, a professor of nephrology at the VA Puget Sound Health Care system and the University of Washington in Seattle, and her colleagues. The study is titled: “A deeper appreciation of patients’ emotional experiences may offer important opportunities to improve care.” The study was published online on June 28, in the Clinical Journal of the American Society of Nephrology.
Harrison’s article follows:
CKD: Emotional Toll Underappreciated
By Pam Harrison, Medscape Medical News
July 06, 2018
The emotional toll that chronic kidney disease (CKD) has on patients is likely underestimated by most healthcare professionals, a descriptive study suggests.
“Patients with advanced kidney disease interviewed for this study described feelings of isolation, abandonment, alienation, mistrust, and even self-blame that would probably be surprising to the providers taking care of them,” Ann O’Hare, MD, professor of nephrology at the VA Puget Sound Health Care system and the University of Washington in Seattle and colleagues write.
“A deeper appreciation of patients’ emotional experiences may offer important opportunities to improve care.”
The study was published online June 28 in the Clinical Journal of the American Society of Nephrology.
O’Hare and colleagues enrolled 27 patients who were under care in the nephrology clinic or dialysis unit at the VA Puget Sound Health Care System in Seattle. Participants completed a 45- to 60-minute semi-structured interview that covered “both general questions about their illness experience and encounters with providers and the health system and more specific questions about their experience and perspectives on advance care planning,” the researchers explain.
Among the participants, 37% were receiving hemodialysis at the time of the interview, 19% were receiving peritoneal dialysis, and 44% had not yet started dialysis. The mean age of patients was 63 years, and almost all patients, at 96%, were male.
Three main themes emerged from analysis of the interviews. The first was the emotional impact of interactions with the providers themselves. “When providers seemed to lack insight into the patient’s experience of illness and treatment, this could engender a sense of mistrust, abandonment, isolation, and/or alienation,” the authors elaborate.
The second theme was related to the first and engendered similar feelings of mistrust, abandonment, isolation, and alienation, but this time from encounters that arose through interacting with the healthcare system.
The emotional impact of the illness itself on the patient was the third theme to emerge from the interviews. “Patients struggled to make sense of their illness experience, worked to apportion blame, and sometimes blamed themselves,” O’Hare and colleagues report.
By way of examples of how these feelings could come about, the authors point to situations where patients felt that providers did not seem to be acknowledging them as a whole person, which led to feelings of alienation. Feelings of mistrust, in turn, could arise upon disease progression, which led some patients to question the quality of the care they had received earlier on. Others cited situations in which they felt unaccompanied or even abandoned in their journey through treatment and procedures.
Often, patients expressed feelings of isolation in their experience of their illness. “Patients could also be impacted emotionally by how care was organized,” the researchers continue. For example, providers were often obliged to move in and out of an individual’s care as their illness progressed, triggering feelings of mistrust. Patients also expressed feelings of abandonment as the care they received appeared to be fragmented or when providers did not appear to collaborate with their colleagues.
Some patients expressed feelings of alienation when, for example, they were given a tour of the dialysis unit, which many of them found quite distressing.
“The question of whether and to what extent [patients] were responsible for the course of their kidney disease (or illness more broadly) was one with which the individuals we interviewed struggled greatly,” the study authors observe. For example, interviewees often assumed that they had brought their illness on by either not doing something they should have or by doing something they should not have done.
“Even patients who understood their kidney disease to be multifactorial seemed to assume that they might have been able to do something to alter the course of disease if they had only known more,” the researchers write. The authors also point out that whether patients felt they were personally responsible for their illness could amount to a matter of “considerable moral importance” to them.
“Even well-intentioned efforts to increase patient engagement in care (e.g., efforts to promote living well with chronic disease, or healthy aging) can have the unintended effect of making patients feel responsible for their ill-health or disability,” the authors note. “Improving education and health literacy among patients with kidney disease and building communication skills among nephrology providers will go some way toward improving communication between patients and providers.”
However, they caution that improving communication between patients and providers will require providers to make a greater effort to more fully understand the emotional toll the illness has on patients.
Real Patient Engagement
In an accompanying editorial, Denise Eilers, BSN, RN, who sits on several of boards of directors, including the board for Home Dialyzors United and the National Kidney Foundation Iowa, notes that all successful discussions about the treatment choices that patients with CKD face must involve real patient engagement. “For patients and their family, choice is about life goals, which are ever changing targets,” Eilers writes.
For example, a young employed parent is very likely to have different treatment goals than an 80-year old being cared for in an assisted-living environment. Conversely, there may well be 80-year-olds who plan to take up sky diving in celebration of making it to their 80th year. “Each patient is an individual and assumptions are detrimental,” Eilers cautions.
She also notes that findings from the study support the need for nephrologists to have difficult conversations “upstream” so when a serious situation does evolve, “there is a clear understanding of the patient’s wishes,” she writes.
Above all, Eilers says this study is “especially timely” given the anticipated wave of baby boomers who are at risk for a variety of chronic diseases, including CKD. “That generation, of which I am a member, has been described in various terms such as goal oriented, self sufficient, questioning, and involved,” Eilers notes.
“The sheer numbers of these older, non-traditional adults will make it necessary to move the needle further toward shared decision making,” she suggests.