Dialysis and People: The Value of Compassion and Empathy

Herbert PardesHerbert Pardes, MD, is Executive Vice Chairman of the Board of Trustees, New York-Presbyterian Hospital

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Having recently experienced an excellent meeting on mental health, chronic kidney disease (CKD), and ESRD, I wanted to offer some thoughts about the extraordinary role that psychology and people play in the course of this illness and its treatment. I commend the Rogosin Institute for convening a marvelous group of leaders from various parts of the country to deliberate on these issues.

What does one learn from such a roundtable? First and foremost, that kidney disease has a potential for dramatically disturbing a person’s sense of well-being. Many people with serious kidney disease are not aware that they have it. It comes as a shock. It is important to realize that the individual with CKD has substantial challenges to handle. It is not easy to travel. It is more formidable to take on a full day’s work. Fear, unfortunately, arises from all kinds of unnerving developments in the course of CKD.

CKD can affect people of all ages. The psychological effects most frequently seen are depression, anxiety, and even post-traumatic stress disorder. Although florid psychosis is rare, depression is estimated as present in some 37% of dialysis patients. The greater the depression, the higher the risk for a downward course.

In the psychology of individuals, it is not uncommon for a patient to feel that their illness represents punishment for something. It is important to make clear that this illness has nothing to do with guilt and that there are medical, biological, and psychological phenomena that cause CKD and its problems.

Another problem is financial support. Although Medicare provides payment for most patients with ESRD, practical help and advice from knowledgeable social workers or others who understand health care finance are important in reducing the stress.

There is an interactive effect in that the better the patient’s attitude toward the illness, the better their course. Inducing people to take charge as opposed to feeling overwhelmed or devastated is critical. Finding ways to have the patients contribute is important. A person who feels consequential and that their life has value feels much better.

A good barometer for whether an individual will be able to effectively deal with kidney disease is how well he or she was able to cope previously. When people have successfully managed challenges before, there is a greater likelihood that they will be able to manage the life changes required by CKD.

Family support is critical. Family can be very helpful in not discouraging patients from work. Patients with CKD can travel, work, and have prospects of a lengthy life. There are CKD patients who have lived more than 40 years after diagnosis. That said, patients and their families need both physical and psychological space. Some patients manifest great anger, and it takes the care team as well as the family to be able to help patients deal with that anger. Occasionally, a caring spouse can become a needy spouse, requiring more team support to get through that crisis. Attention must be given to the care partners as well as the entire family. There must be relief for them and understanding of how valuable they are. Group therapy can be very helpful.

So, how can we do this better? How can we bring as many caring people as possible into the situation to maximize the general welfare of the individual with CKD? Efforts should focus on strengthening quality of life by expanding the individual’s interests and the opportunity for enjoyment and good social contact. We are clearly asking patients to do a lot, including taking on a tough diet, taking multiple medications, and altering their daily lives. We must treat all of our patients as human beings with all of the feelings, worries, good times, and bad times that all of us experience and do everything that we can to enhance their overall feeling of wellness, involvement, and importance. It is well suggested that the patient should feel that the various professional and nonprofessional caretakers are partners. We are in this together and will strive for the best possible life, much happiness, and positive experiences and developments in the setting of these very demanding challenges.