Keeping a Brave Front

The burden of end stage renal disease often seems insurmountable. This is especially true for patients who are on renal replacement therapy, whose lives and whose family's lives have been changed by this dreaded illness. As nephrologists taking care of dialysis patients, we are witnesses to the effect chronic kidney disease has to the patient and their family. Often, aside from managing the patient during regular dialysis sessions, we take the time to converse with the patient and with the patient's family. There are many things one can learn about the patient's life outside of the dialysis unit and when we as physicians take the time to listen, we often inadvertently immerse ourselves in our patient's personal lives. It may be joyous occasions that the conversation is about, which lifts both the patient's and the physician's spirits, but it may also be about the difficulties of having a chronic illness, which brings about a sadness felt both by the patient and the physician. As physicians, it is our responsibility to help patients feel both physically and emotionally well, but we can only do so with so much emotional strength. It is sometimes unavoidable that when we hear and feel the hardships of our patients, we too feel the sadness and sometimes the hopelessness of the situation.

I am sharing these thoughts, after I had one such conversation with a patient. In my 20 years of practice as a Nephrologist. I've had several patients on maintenance haemodialysis for many years, and I see them at each dialysis session. I have patients who have been with me as a nephrologist from the earliest stages of renal disease, through the years of unrelenting kidney damage and eventually to the sometimes, unavoidable endpoint of dialysis. It is a relationship that lasts for several years, through the most difficult times of patient lives and also through the most joyous times of their lives.

On this particular morning, I was visiting one such patient. He was admitted to the hospital a few days prior. He has been on dialysis for more than three years and he has actually been my patient even during his pre-dialysis days, a period of around 10 years. This patient, like many others, is very strong willed, very optimistic and would always find a way to find happiness even in very dire situations. He has been relatively well since he started maintenance dialysis and had managed to avoid hospitalizations over several years of having chronic kidney disease. However, over the past couple of months, he has suffered so many setbacks that required repeated hospitalizations. As his nephrologist, I managed to keep his spirits up and I also managed to minimize the cost of hospitalizations to a very reasonable level. The patient has a very supportive family. They are always there to reassure him that they will always be there for him and for him to not give up, that cost is not an issue and that eventually things will get better. My conversations with him and his family often would end on a happy note and I too would often feel uplifted after my rounds with him.

Until this one particular morning, when I was ready to share with the patient my news that he can go home. He has been in the hospital for a couple of days and I thought that this piece of news would be most welcome. After I proudly announced that he can be discharged from the hospital, the patient remained silent just simply nodding his head. In the back of my mind, I knew something different was going on. The news of a hospital discharge often brings excitement and hope, but not this time. So, I asked the patient, why? Why the silence. He looks at me sheepishly and told me that he knows that his family and I, as his nephrologist, always agree with one another in trying to make him feel better, but he himself has thought that he was being a burden to everybody. That because of his illness, he has caused hardship to his family, taking so much of their time and effort, but most of all that his illness is financially draining his family. He is afraid of what future they will have. At that very moment, his family was quietly sobbing, and I felt the urge to burst into tears myself. I reminded myself, you are a physician, I should not show weakness in front of my patient. Be strong, so the patient can also find the strength. I was at a loss for words. How does one say that what he was thinking is true? I finally found my words, very carefully formulating the sentences and phrases in my mind. I told him that his life is worth more than anything in the world to his family. That although they have suffered because of his illness, they would gladly suffer with him. With those simple words, at the corner of my eye I saw his family start to smile and the patient started to smile too. The patient then held my hand and quietly said he was fine. I left the patient's room, still feeling emotional. In spite of the brave face I had while in the patient's room, I could feel the sadness surround me. I knew this was not the last time this patient will need admission, I knew that his family was suffering, and I knew that they were financially drained but the most I can do is try to keep him healthy and to keep a brave face when moments like this arise.

Chronic kidney disease imposes a major emotional and financial burden on the patient and the family. As nephrologists our primary responsibility is to ensure that we address the patient's health related issues. In the course of caring for our patients, especially, those on maintenance dialysis we find ourselves immersed in the patients and their family's personal lives and personal issues. It is because the patient has a long-standing relationship with us. This very nature of this relationship has an effect on both the patient and the physician. In an article on doctor-patient relationships on patients with chronic illness, it was pointed out that medical students are deterred from choosing specialties that involve managing patients with chronic illnesses [1]. This is mainly because as medical students, physicians are focused on patients with acute illnesses and the endpoint that is emphasized is cure. Unfortunately, patients with chronic illnesses such as chronic kidney disease will not achieve complete cure.

Our frequent encounters and visits allow the nephrologist to spend more time with each patient. A challenge for each one in nephrology practice is being able to maintain a certain distance. A distance that allows us not to be swallowed up by the hardships and emotional toll our patient's face but not too far enough that we can still have empathy. This may be made possible with collaborative care, where the care of the patient is not dependent on one single individual, but rather a healthcare team. Otherwise, if only the physician is involved in the patients day to day and long term care, then the risk of becoming too emotionally involved with the patient is high.

We as physicians must put up a brave face in spite of the emotions we feel for our patients, because that is what our patient's need, a brave face. This is only one story of I'm sure many others. Emotional involvement with our patient's plight is real, but we should as nephrologists learn to keep it in check. There are so many patients to take care of, so many lives to save... we must always keep a brave front... our patients depend on it.

References

1. Campbell C, McGauley G (2005) Doctor-patient relationships in chronic illness: Insights from forensic psychiatry. BMJ 330: 667-670.