I was standing next to the dresser when I got the call. My doctor said the biopsy result was positive and that I should call the bone-marrow transplant unit immediately. We had been waiting for that call and probably also expecting the result, but I remember I had to hold on to the dresser before I told my husband and mother what the doctor had said.
Since the diagnosis of a bone-marrow disorder, we had been living in a state of anxiety for almost a year. I use the word “we” for my illness and treatment, because when a serious illness or injury strikes, the entire family goes through it with the patient. In many cases, they suffer more than the patient herself.
The New York doctor who did the biopsy was in Hospital A, and, even before the disease had progressed to acute leukaemia, she had already set our appointment and opened the case at Hospital B. In her opinion, Hospital B was better for the kind of transplant needed – but she still discussed the reasons behind her decision with two other doctors, who had treated me in Hospital C.
It amazed us how senior doctors in the US, from various hospitals, were willing to talk to each other and discuss the treatment of a patient. Our experience of Pakistan was very different.
Running after doctors, trying to find the right doctor, trying to find the right course of action, trying to find money to afford the best treatment available, trying to find a bed in the hospital, trying to arrange for blood, trying to get “genuine” medicines, and then the sheer helplessness of watching your loved one in discomfort and pain. This desperate story is played out around almost every bed in every hospital in Pakistan.
It is almost impossible to get doctors to talk to each other, even in the same hospital, God forbid if they happen to be in different hospitals. For ailments that require this coordination, say, when a number of bodily systems are involved and medicines can affect different organs, getting doctors to coordinate their treatment and keep the treatment of others in consideration is an almost Herculean task.
Busy with work in December 2008, I did not have time to look into an anaemia diagnosis for a routine bloodwork. I did take the Vitamin B12 injections, and believed that everyone got out of breath climbing the stairs to our fourth-floor office. It was when the GP sent me for a bone-marrow biopsy that we found it was myelodysplasia.
My mother and I went to the specialist doctor at a Lahore hospital to consult about the diagnosis; she said we should get another appointment and bring my husband so that she could discuss it with him.
My brother’s friend, a brilliant oncologist in New York now heading a centre in the prestigious Mayo Clinic who we had been sending the results, wanted to discuss the case with the specialist and asked if she’d give a time when he could call. The specialist refused. She said there was nothing to discuss. She also did not prescribe anything.
After consulting his colleagues in New York, our friend emailed a course of action that included some injections. I took a printout to the specialist. She said, “Even we can give these injections.” I wanted to ask her why hadn’t she prescribed them already, but I was planning to get treated in that hospital, and stayed quiet.
Staying quiet is important, because you don’t want to annoy anyone in the hospital since you need the nurse, the bed, the appointment, the transfusion, the labwork, the doctor. One comes across some lovely people, who are doing their duty, and then some more with a smile. Others, especially up in hierarchy, behave as if they are doing you a personal favour. Ironically, the way our system is set, most of them are doing a personal favour.
We had to send my biopsy slides to Karachi since no laboratory in Lahore was equipped with the panel needed. It took quite a lot of money and many contacts for the laboratory in Karachi hospital to even accept the slides for testing. Then another effort of family and friends, working their contacts, was needed to get the biopsy report back in time. We got the report after ten days, which was considered very quick, but one part of the result was missing. Another week and many phone calls to contacts later, we got the rest of the report. Imagine everyone’s distress when doctors in the US said the two results could be possible separately, but not together.
We are hugely lucky to get the transplant done in the US. It has been a long and difficult journey. Also a life-changing one. Amongst many other lessons, we also learnt what it means to say that health is a basic right. Living in a culture of patronage, and facing the intensity of a health emergency, we accept a favour and refrain from talking of “rights.”
And yet, the top hospitals and medical practices of the world have the concept of “right” inbuilt in their systems. The best doctors are those who have a deep sense of responsibility towards the patient; who want to find the best possible treatment and help for the patient; and who are not quick to run down “competition,” whether it is a doctor or a hospital.
How many times have we gone to a doctor for a second opinion where he has dismissed the first doctor’s course of treatment outright. They never pick up the telephone and discuss the case with each other – and then give the reasons for their opinion.
A good doctor has the professionalism to refer the patient to the right doctor – or consult with other doctors and benefit from their knowledge base. Personal egos or profit should not hurt the patient.
I was in the hospital for four months. When I was admitted I felt extremely guilty at putting my family through so much stress. My mother would not leave my side. One day, a nurse mentioned this to the doctor, in the hope that she would tell my mother to go out for longer breaks. The doctor looked at the nurse and said, “If it was my daughter, I would be lying in the bed with her.” The doctor could understand what my mother was going through, and that calmed me.
A good doctor has compassion, empathy, and generosity. Patients are ill and tired, the caregivers are anxious and worried – one wants the doctor to be generous with her kindness and compassion.
Doctors, nurses, and the support staff are overworked everywhere in the world. The lack of facilities in Pakistan adds extra stress on them. But we see many top consultants being polite to the rich patients and short with the not-so-connected ones. Given that leading Pakistani doctors in Pakistan have also been trained in the UK or the US, it cannot be training that is leading to these differences.
Is the cause the system they are embedded in? The hospital standard operating procedures (SOPS) that we saw in the US were impressive. Insurance system and more resources are important factors. But so are the much tighter accountability and monitoring systems that hospitals have built for doctors and staff. Also there is the law which, though slow, does provide justice through strict liability regulations.
Compassion for the patient is a must in a doctor, but its manifestation can vary substantially with each personality. Better SOPS, rules, supporting environment, and laws make sure that even where individuals are short on compassion, patient-care is not compromised. These are the systems we need to improve in Pakistan. The many examples of medical negligence and malpractice that are almost regularly reported in the media should give us plenty of impetus to move in this direction.
The writer is a former editor of The News Lahore.