Doctors Dealing with Death of Patients – In Pursuit of Equipoise

Dr Sreejith Parameswaran

Friday, 23rd August 2019, 6:55pm.

Another day, another death.

I sometimes feel the life of a Nephrologist can be described as an unending journey of taking care of patients who are mostly miserable, punctuated frequently with deaths of patients under their care.

I was away from work on an official assignment and my resident at the outpatient dialysis centre messaged me that Ms Vidya* died that morning. She was16 years and was a special needs girl, being deaf and mute from birth. Her parents were teachers and were the only people able to communicate freely with her. Unlike what we often see during practice, despite being a girl with special needs, her parents took care of her really well. To me, she came across as a very intelligent girl, despite the limitations in her ability to communicate. She came to us after developing kidney failure and after being initiated on dialysis elsewhere. Her parents brought her to us because they wanted her to get a kidney transplant. Both the parents were willing to donate kidney to her, but, unfortunately, both were medically unacceptable as kidney donors. The younger sibling was below the legally permissible age for organ donation. While I initially thought the parents will give up once they were told to be ineligible to donate, that was not how it turned out to be. They were regular with follow up visits and kept bringing up the issue of getting their daughter somehow transplanted. And so, we decided to waitlist her in the deceased donor kidney transplantation list. She was on the list for more than an year and when it was evident that she was likely to receive a kidney soon, we suggested that she shift her dialysis to our outpatient haemodialysis centre, so that we can monitor her frequently and ensure that she remains medically fit for the operation, which usually happens at a short notice (given the nature of deceased donor transplantation). One month back she was about to be allotted a kidney, but before the organ allocation was done we found out that she was taking blood thinning drugs — Aspirin and Clopidogrel — which she did not really require and we had not prescribed. Apparently, she was started on those drugs on the advice of a dialysis technician at the centre she was undergoing dialysis before coming to us. She was told that the drugs were required to keep the AV fistula patent for her dialysis treatment. The protocol in our transplant program is that patients on dual anti-platelet therapy is not acceptable unless it is for a compelling indication and cannot be stopped. In her case it was evident that they were not necessary and hence it was decided that the drugs should be stopped and she will be allotted kidney the next time a kidney from a matching blood group deceased donor becomes available. The parents were disappointed, so were the dialysis team. But she still had a chance. Or at least that was what we thought.

About a month after this episode, i.e., two days back, she developed severe breathlessness one day after her regular dialysis session and was brought to the emergency dept of our hospital. She was in severe pulmonary oedema and had to be placed on a ventilator and was taken up for emergency dialysis treatment too. But she developed cardiac arrest and passed away. My resident thought it prudent to inform me, even though I was away from work.

Looking back, I can only wonder about the catastrophic consequences of apparently mundane decisions we, doctors, make. If she was not prescribed those unnecessary medicines, she would have undergone transplantation that day. If someone at our dialysis centre had discovered earlier that she was on those drugs, it could have been stopped well before she was to be allotted the kidney. Or, if our team had decided that we will still go ahead with the operation, despite her being on dual anti-platelet agents, she might have developed bleeding complications during the operation, but could she have escaped death? Did we fail her in our responsibilities as her care givers? These questions will linger for ever in my mind.

And there is no end to such instances in our lives as doctors. Seeing our patients departing from this world is an unending ‘sequence’ extending through the life of every Nephrologist.

The disease – kidney failure – itself is deadly. If the disease is bad, often the ‘cure’ is worse. The treatment options available, like dialysis and transplantation, helps a large – no, huge – number of patients to stay alive and lead reasonably productive life. But they are still not free from the risk of complications. A life on dialysis is often a gamble, a tight rope walk, where the patient needs to balance her diet (very restrictive), medicines, amount of water she drinks and strictly adhere to the regular twice or thrice a week dialysis schedule without skipping any treatment sessions. Any lapse in any of these can tip the delicate balance in the body bereft of kidney function and can be fatal. This is all the more difficult, if you are not well off and unable to access medical care at your will, at centres offering good quality kidney care. Despite all the advances in dialysis and transplantation, the life span of a person who develops kidney failure is shorter by more than a decade or two, compared to similar, but otherwise healthy, individuals in the community. The effect – Nephrologists, who take care of these patients, often for years together, given the chronic nature of the condition, are also probably among the sub-set of doctors who see a disproportionately high proportion of their patients dying under their care. The fact that you might have been knowing them for years together, including details of their personal, professional and family life and their family members, often makes these deaths somewhat of a personal nature for us. Even when the family was happy with the care the patient received, I often find it tough to deal with the bereaved family.

There was this little girl with kidney failure who was on regular treatment with us for more than eight years. She came to us with advanced kidney disease ten years back and after being managed with medicines without dialysis for about an year, she was started on Peritoneal dialysis. She did well for a few years, but after being on dialysis for six years or so, she started having problems and eventually succumbed. Her two brothers also had kidney disease and as part of creating a video documentary on the family, I had visited their home about 45kms from our hospital. The dialysis technicians involved with her care who were aware of my involvement with the family as well as the patient’s parents, I believe, expected I will visit the family after the girl passed away. But I did not go. I knew I will break down if I went there and I did not want to do it. I know it is okay for a doctor to display emotion, but I decided against putting myself through a difficult experience like that, at that point of time.

Looking back, I often wonder about the ‘Stages’ I have passed through in dealing with death as part of my work.

As doctors, disease and death are very much a part of our professional lives. Till the time we were introduced to clinical medicine in the third year (during our time it was in the third Year, now it is in the second year itself) of our MBBS training, death was as mysterious, intriguing and terrifying as it was, to any other 19 or 20 year old. And then, suddenly, it is everywhere around you! I remember we were not ‘prepared ‘ or ‘trained’ in any formal ways to deal with death or any other similar ‘tough’ situations we were to face, before being introduced into Clinical medicine. We learned to deal with these things observing what our seniors, the postgraduate trainees, did. I remember being more intrigued than terrified, repelled or feeling sad witnessing patients die, as a medical student.

I distinctly remember the first patient l witnessed dying while I was still a ‘newbie’ in the medical wards. A young man of about my own age was admitted with a condition called Aplastic Anaemia. It is a disease where the bone marrow fails to produce blood. It is a life threatening condition even today, despite significant advances in its treatment. Needless to say, 25 Years back, especially for a patient from not-so-privileged background, it was a death sentence. But l was still too ‘medically naïve’ to understand this, at that point of time. Every student was allotted a few beds in the ward and we were supposed to be familiar with the patient’s condition and their daily progress, as part of our learning process. Since this particular patient was on a bed allotted to me, I had taken a detailed history and knew about his occupation and his family background, in addition to the details of his illness and treatment. I used to talk to him and his parents daily. Then, one day, when I reached the ward in the morning, he was not in his bed. The PG in the ward told me that the patient has been transferred to the ICU because his condition had worsened. As students we were not supposed to enter the ICU. However, the ICU was adjacent to the ward and I continued to get Information on him through the PG. His condition continued to worsen. Then, one day morning, I found him back on his previous bed in the general ward. I was perplexed and asked the PG why was he transferred out of the ICU when it was obvious that he was getting worse. He told me some thing like “there is nothing more to do for him” and “the family also wished him to be shifted back to the ward”. I didn’t believe it, then. I went back into the ward and found the patient sitting on his bed with his mother helping him brush his teeth. I decided to leave them alone for the time being and proceeded to talk to another patient, thinking I shall return to him later. Not even an hour would have passed and I noticed patients from other beds in the ward and their attenders gathering around his bed. He was lying motionless in his bed and the mother was crying. The PG came to the bed side, checked his heart and also his eyes with a torch and then closed the patient’s eyes and went away. I realised that the patient had died. Being a newbie medical student, I was surprised that someone who was sitting up and talking, though ill and weak, can suddenly drop dead like that.

But that was just the beginning of my long rendezvous with dying patients. I have learned, along the way, that death is not mysterious or even ‘sudden’, as it may appear on many occasions. It can appear to be sudden and mysterious, but it is rarely so, in the context of hospitalised patients.

I was myself ‘amused’ at how far things had changed with me, from the death of this patient, to the time when, almost 10 years later, a patient’s attendant came looking for me because he wanted to meet the doctor “who could foretell death”!

I was working as senior resident in the Nephrology dept of a hospital in North India. When I was on duty a day, there was a patient who was really sick, admitted by another unit, in the high-dependancy unit (HDU). He was having kidney failure for some time and was an dialysis treatment for about an year, and was then admitted with multiple, life threatening complications. He was relatively young, in his late 30s, but he was not really doing well. The treating team felt that they had reached the end of the road for him from a curative treatment point of view and felt that supportive care was all that could be offered. Since I was the senior resident on call and responsible for his care during my duty, I kept a close watch on him, in the HDU. At one point, I noted that none of the patient’s attendant’s were available at the HDU premises. I asked the duty nurse to contact them and ensure that at least one attendant is always available with the patient or in the HDU premises. A young man appeared after sometime and came to me, because he wanted to know why I was insisting on someone to be always available at the HDU. I told him the truth – that in our assessment the patient was not doing well and “anything can happen anytime”. He didn’t appear very convinced about my prediction of ‘impending doom’, and he went away, assuring me that he will stay with the patient. After a few hours the patient died. I completed the formalities of certifying death and I forgot about it. The next day, while I was in my ward, a middle aged man came and said ‘Namaste’. I asked him what he wanted, assuming him to be a family member of a patient in my ward. He asked whether I was the doctor who was looking after the patient who died the previous day in HDU. I answered in the affirmative, but was perplexed why the patient’s family members were still hanging around. I asked him why he was still in the hospital. Then he told he was not related to the patient who died, but his relative was also admitted in the HDU. He wanted know from me how his relative admitted in the HDU was doing, because, the relatives of the patient who passed away told him that a doctor had ‘predicted’ the death of the patient hours in advance! This guy thought that it was a ‘divine skill’ to predict death in advance and he wanted to “meet the doctor who could foretell death”!! Needless to say, I was amused no end. I told him I had no such special skills, nor I knew the patient he was referring to.

But, looking back, I couldn’t help but wonder how far I had travelled, from the naïve student in the ward, to be someone, in the eyes of a lay person, foretelling death!

I had ‘progressed’ from being intrigued and bewildered about the way patients died in hospital to someone who was able to look at death as just another event in hospitals, being inevitable, sometimes. I developed the ability to identify patients who were ‘sick’ and about whose condition the family needs to be appraised of, so that they are prepared for the worst. I was involved enough to ensure that the patient received appropriate care, while I was at the same time emotionally detached enough not to grieve over the death. This was, I believe, the next stage of dealing with death in my career as a doctor. And, undoubtedly the most comfortable stage, so far.

The subsequent – third – stage started when I commenced working independently as a faculty at an academic Nephrology department and started having patients on long term care under the various clinical services. Unlike my days in training and early days as faculty, when I did not have the opportunity to be involved uninterruptedly for years together in the care of individual patients, the current stage of my career meant I started encountering loss of patients who were on long term treatment with us. And I believe this is the most difficult stage, when each such loss is somewhat personal. In addition to the feeling of loss of an individual whom you knew closely, this situation also risks the possibility of triggering feelings of guilt in the doctor’s mind. It is indeed a troubling situation where the treating physician is left with self doubt, thinking whether some medical decisions he took had a role in the patient’s death. Whether certain things, if done differently, could have kept the patient alive. Like in the case of Vidya whose death has left some troubling questions, albeit on hindsight.

While it is true that this is often an exaggerated fear or the result of uncharitable attitude towards ones own potential failings and a result of quest for exacting standards for oneself on the part of the doctor; the feeling can really torment him/her for a long time or even for a lifetime.

Is there a comfortable way out of this situation for doctors? Being less involved with their patients and keeping the interactions impersonal is, in my view, an impossible thing to ask for, in a profession like medicine. There has to be a better way, which preserves the personal touch in a long term doctor-patient relationship, while at the same time protecting the doctor from emotional trauma from losing patients with whom he had developed a personal connect. I am, still, in the pursuit of such a balance in my relationship with my patients. May be that is the next stage of my proficiency in dealing with death of my patients I am progressing towards!

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*Name changed

Originally published in ‘Hiraeth — Montage 2020’, the annual college magazine at JIPMER, Pondicherry, India.