Doctors and Empathy — Is more always better?

Sreejith Parameswaran

The emotional backlash from being empathetic at work

I have repeatedly tried to ignore it or deny it, but it seems the ‘tragedies’ patients with kidney failure face in their lives have started catching up with me, of late.

Nephrologists, like physicians in some other medical fields, are forced to deal with situations which often tug at our heart. I am not really sure, these days, whether this is indeed a good thing. During our training as well as in our popular culture, there is great emphasis on the need for doctors to be empathetic. However, I am probably learning the hard way, that it has its down sides too.

There was this young lady, 18 years of age, who sat across my consultation table with both herself and her mother crying and helplessly looking at me. The patient was married for almost two years now (it appears marriage before 18 years is still prevalent in some districts) and she was found to have kidney disease when she was pregnant with her first child. Since the kidney failure was fairly advanced, she was referred to our hospital, where she was started on dialysis. She delivered a healthy child, but continued to require dialysis, was declared ESRD (End Stage Renal Disease) and advised kidney transplantation. The mother readily volunteered to donate. She was 37 years of age; she had married at the age of 14 years, had a child before her husband died about 15 years back. She ran a flower shop along with her mother (patient’s grand mother) who was also a widow. The preliminary work up showed that the mother was a diabetic (never tested earlier) and with her FBS around 400mg/dl, and given her young age, she was unacceptable as a living kidney donor. The grandmother also had diabetes and hence could not be accepted as a kidney donor. The blood group of the patient’s husband matched with her’s and he was otherwise apparently fit. But, as soon as it became evident that the patient’s mother was having diabetes and hence was unfit to donate, the husband left for his native place, apparently for some urgent work. But he stopped attending calls from the patient and her mother. His mother (the patient’s mother in law) later on informed that he was not interested in donating his kidney, neither was he interested in a wife with kidney failure! Basically the wife was left high and dry, while facing a life threatening disease. They were staying in Pondicherry for treatment and the patient was undergoing dialysis from a private hospital – the expenses for their stay and treatment were being met by the money sent to them by the patient’s grandmother, from her earnings from the flower shop. The patient and the mother wanted me to suggest a solution to their situation – to somehow help her to get kidney transplantation done. We, the treating team, was in a fix again, because, the fact that the patient was still legally married and the husband was a suitable kidney donor, made the patient ineligible for registration under the ‘first priority’ category in the deceased donor waiting list, she will have to be placed in the ‘low priority’ category, unless she manages to get a legal divorce! For all practical purposes, this lady was being condemned to a ‘life sentence’ on dialysis, which she can’t afford! I was upset and felt helpless at her sad plight – what sort of a guy will do this to his wife, who recently bore him a child too? Alas, since when has education and a secure job started making men more humane, in matters like this? If the husband didn’t want to donate his kidney, so be it, but what was the need to dump the wife and his own child like this?

Then we have situations where people go to the other extreme. There was this 24 years old guy, at the dialysis clinic, who wanted to register in the deceased donor kidney transplantation waiting list. He was on regular dialysis for more than an year now with another hospital and I was seeing him for a only couple of months now. He had developed complications with his AV fistula used for Haemodialysis and he was sent to our hospital for emergency operation on a holiday. He was operated upon and the fistula removed, he was back on dialysis through a catheter. Having realised the uncertainties associated with his life on dialysis, he was considering the option of undergoing kidney transplantation. However, from his family details, I knew that his mother and brother had a matching blood group and could be potential donors. Since the brother was quite young and there was family history of diabetes, it was not prudent to consider him as a donor. To me, the mother looked like a potential donor. I pointed out this to him and also wondered what made him wait more than an year to consider this option. His answer was an unusual one — he didn’t want his mother to donate her kidney to him. He told that his father, who was diabetic and an alcoholic, died almost 20 years back from complications of diabetes and had developed renal failure before he died. The mother brought up the two kids with great difficulty; they were both well educated. Both of them were working in the IT field and earning well, when he fell ill. He kept repeating that he “cannot let any harm come to my mother” and broke down in the clinic, despite all his efforts to keep a straight face. Mind you, he was not among those patients who start crying and start pleading with the doctor about their helplessness at the slightest excuse (which is a routine affair in our practice). He was a well balanced, self confident, educated person who was capable of taking care of himself. He had done enough ‘research’ himself to know that living donation was safe, except for the surgical risks involved. He didn’t want to expose his mother to that much of risk too. This was a tricky situation, because, as per the transplantation waiting list rules followed at our institution based on the Transplantation act (THOA) passed by the parliament, if there was an eligible voluntary kidney donor in the family, a patient is registered in a low priority category of the waiting list. Given the sheer number of patients waitlisted in the ‘priority’ category (no kidney donor in the family), there is little chance someone in the low priority category will ever be allotted a kidney. The patient was aware of this situation. And this was indeed a peculiar situation, where the mother is keen to donate, there is no other suitable kidney donor in the family and still the son do not want to accept the kidney from his mother. We hardly ever see any patients refusing to accept organ donation from parents / siblings / spouse, while we see such people refusing to donate, all the time (except the mother and the wife)! I told him to take some time to think it over, before taking a final call on this. More than six months have passed since we discussed the option of undergoing transplantation with his mother donating, but he has not agreed to accept his mother’s kidney till now.

While most of these situations are beyond the control of the treating physician, there are instances where the sufferings of patients and their families haunt the treating doctor because he believes that he also played a role, albeit indirectly, in the unfortunate events.

I vividly remember the days of intense ‘self blame’ and anguish I went through after one of our kidney transplant recipients committed suicide in the hospital where I working as a trainee, by jumping off from the window of his room on the 6th floor of the hospital. He was in his mid-20s and had undergone kidney transplantation at our hospital about an year and half back. Both his parents had volunteered to donate their kidneys to him. Initially the mother was worked up as the kidney donor but the HLA typing did not show a match and hence HLA typing between the father and the patient was also done — there was no HLA match with both the parents, which was biologically impossible. When confronted with the HLA typing report by the treating team, the parents finally conceded that he was indeed their adopted son and not biological son. They did not have a child after marriage and they had adopted him. The parents or others in the family had never told the patient that he was an adopted child, all these years. The truth had to be told to him, because additional regulatory approvals were necessary to go ahead with the transplantation when legally defined ‘near relatives’ are not donating. He underwent transplantation successfully, with the ‘mother’ donating her kidney. However his sufferings did not end there. He had a stormy clinical course after the transplantation, with multiple complications happening one after another, rejection happening some time and some infection or the other happening on other occasions. The family was not from a wealthy background and they had to sell ornaments and property and borrow money from others to continue his treatment. It was becoming increasingly difficult for the family. And then he developed another instance of fever with worsening of the kidney function and cytopenias and was re-admitted in an isolation ward room where I was the senior resident. It was decided during ward rounds that he needs tests for CMV infection and few other tests and it was also decided to start him on anti-virals. After the ward work got over and before leaving for the OPD I went to the isolation room where he was admitted. He was alone and was lying in his bed with an IV line running into one of his upper limbs. I told him about the tests ordered and the drugs which will be started. He asked me how much all that will cost and I told him the approximate expenses for the treatment planned. He did not say anything and I left his room and set out to the OPD. On my way to the OPD I stopped at the canteen to grab something because I had missed my breakfast. I reached OPD about half an hour after leaving the ward. When I was entering the OPD, I saw the senior most resident along with my Professor rushing out, apparently agitated. I asked my colleagues what was the matter and I was told that the kidney transplant recipient in so and so isolation room jumped out from the window of his room and was found dead on the ground. A few minutes after I left his room, the ward nurse went to his room to check whether the IV infusion was completed and she found that the bed was empty, the IV cannula was lying on the floor and there were drops of blood on the floor in the direction of an open window (which, for some strange reason had no barricading). She went and looked out of the window and saw the patient lying motionless on the ground, six storeys below. Needless to say, I was stunned. I could not stop myself from thinking about what all would have crossed his mind after I told him the expenses. He was an orphan for whom a couple had donated one of their kidneys and exhausted their life savings. And there was no end to his sufferings in sight. He would have felt that he was too much of a burden on the couple, though they never really showed it. He probably did not want it anymore. The only way he could think of, to end the misery himself and his foster parents found themselves in, was to end his life. I am sure he would have never thought how all these might impact the people, the medical team, involved in caring for him.

Situations like these are not infrequent in our practice and I just quoted some instances which readily came to my mind. Given the socio-economic background of the patients who seek treatment at our hospital, there is no dearth of such heart rending, tragic stories.

And I am having this lingering suspicion that getting ‘too much involved’ with my patients and their difficulties is taking a toll on me.

Some thing which never happened before with me, happened when we did organ harvesting from a deceased donor at our hospital, recently. I have been coordinating the deceased donor transplantation program at our institution for over 5 years now. This instance of organ harvesting, where we harvested kidneys, liver, heart, lungs and the corneas from a 22 year old young man, was our 38th instance of organ harvesting from a deceased donor (the number of brain dead patients we gave counselling for organ donation is much more). It is our institute’s regular practice that after the autopsy the body of the donor is handed over to the family by a official representative of the hospital – I have been doing this formality from the beginning of the program. What I do has almost become ritualistic now – just before the body is placed in the ambulance, I place a garland around the neck of the body, I pay my respects with a ‘pranam’ with folded hands, then I speak a few words to the nearest relative available, often the same person who gave consent for organ donation. I thank him/her on behalf of the patients who received the organs/ tissues and their family and the hospital and the medical team, I praise their act of organ donation and wish them well. It is a solemn affair, but I have a long history of doing this, from my training days in Chandigarh. I am still not entirely comfortable doing it, but I am told by the transplant coordinators that I have been doing a decent job, despite my limited proficiency in Tamil. However, the last time was somewhat different, for me. When I spoke to the father of the donor, my eyes swelled, my chin quivered, my voice broke. I had to – shamelessly – wipe my eyes in front of everyone. I spoke to the father very briefly, I couldn’t tell everything I had planned to tell him because I was afraid I might create a worse spectacle there. I must admit that the donor was also a bit different this time – he was a bright 4th year MBBS student at a government medical college in TN, who met with a freak accident (a bike hit the bike on which he was riding pillion) when he was on his way to a movie, with his friends. The sorrow of the parents, both highly educated, had already taken a toll, because I had counselled them in person this time after the treating team determined him to be having severe and irreversible brain injury (the case was special, being a medical student, and the coordinators were away on a field work assignment too) and thus I had got to know them closely; a bit too closely for my own good, I guess!

I believe doing our job well needs us to be empathetic and also we should get to know our patients well. But exactly the same thing makes us vulnerable to the attendant emotional backlash. Striking a balance is extremely difficult and is likely impossible.

I knew that I was not alone in experiencing this. Physician ‘burnout’ is an important issue in many parts of the world and is garnering increasing attention from all stakeholders. I was having trouble dealing with this for quite sometime now and I ended up doing the unthinkable – meeting my colleague in the psychiatry department about myself. We had a detailed conversation and he decided that there was nothing wrong with me – it was the excessive work load and probably an ‘excessive involvement’ with work, taking a toll on my emotional well being.

May be I should take things in my stride and stop empathising ‘too much’ with patients. May be I should spent less time with them. May be I should delegate the ‘difficult’, emotionally taxing tasks, to someone else, in an effort to ‘protect’ myself.

We all should, probably, take our work less seriously and need to ‘dis-engage’ a bit. May be, after all, it is for our own good, to be a bit indifferent, whatever the society says our attributes as doctors should be!

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Originally published in ‘Ikigai’ – Montage ‘19, the annual JIPMER college magazine.