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Focus on Patient empowerment

CHRONIC DISEASES

Focus on Patient empowerment

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It’s one of those dreadful days. Days which remind you so savagely of your inevitable circumstances. That in these unforgiving crucibles called county referral hospitals, there’s no respite to be had. Not for an interning doctor, who, placed at the bottom of the pile in this hierarchy-sensitive profession, gets all the work thrown at him or her.
And it is a lot of work.
I am currently assigned to the male medical ward, a chaotic chamber overfilling with very sick men. Men who have waited too long before coming to the hospital. Waited until they saw death beckoning. There are too many of them, at least thrice the capacity of the ward. They share the hospital beds—grown men with failing hearts, swollen bellies, and damaged lungs somehow fit on a bed no wider than three feet. Never mind the vomiting, the coughing and everything else. I must care for them; update their condition daily, some hourly. Blood tests must be ordered and interpreted, prescriptions must be adjusted, necessary procedures must be done. And yet the influx of new patients never lets up. I need to be with them every minute, and I want to.
But today is when we run the medical outpatient clinic. It’s mostly diabetes and hypertension and their complications. These are deadly diseases that ravage this region, which means the clinic is crucial; to check the general condition, review prescriptions, analyze test results and do the best to keep these people out of complications and out of the wards.
Yes, I am thinking of the ward and all the problems waiting for me. This clinic must end because in need to return there. But I can’t send them away without answering their questions. They have waited six months to see a doctor, and it will be another three before they come for the clinic review again.
I understand why they are so worried about their father; his legs are weak, his vision is getting worse, and the swelling of his feet indicates that the kidneys might be failing. They have been asking questions, more questions, and more questions still. They want to know—to know everything. Most of what I have to tell them is depressing—their father is in the last stages of diabetes mellitus, and with complications so apparent, things will only progress in that direction. I talk to them in that roundabout way of someone trying extremely hard to be patient. Someone who has work to do somewhere else and who shouldn’t use up extra minutes in one session. Someone who knows he can make very little difference in this old man’s life.
Then she says something which captures my attention: It affects everyone in the family. That is, this man, his two sons, his daughter, his grandson all live with diabetes. How is it so, she asks. What can they do to prevent complications? How do they change their lifestyles? What can they do? What about…?
These are serious questions. Not that I haven’t heard them before, or answered them, for this outpatient clinic is all about that. The difference is in the context — three generations of a family afflicted by the same disease. The first already a defeated lion and the others, his progeny, not far behind. That’s an entire family terrorized by a condition which, along with its non-communicable cousins, defines the health burden of this region.
Yes, these are serious questions. And relevant too. Relevant to this family. Relevant to this region. Relevant, and urgent, to a nation facing an increasing burden of non-communicable conditions. They are questions appropriate to the setting and circumstances. And they are directed to the most appropriate person.
The doctor.
That’s who should be asked. That’s who they have asked. That’s from whom information should come.
Who cares that I am sleep-deprived? Why should my worries matter to them? How can I be a doctor if I cannot answer such important questions for my patients? Could I say I did what was in their best interest? How can I live with myself, knowing that I deny people information that could make a difference in their lives? I am overwhelmed by work alright, even burnt-out. But if I cannot give the best here, where else? What does it matter that I treat so many patients if none of them ever gets meaningful attention? It reeks of a perpetual motion scheme—the kind of harebrained busyness that will amount to nothing in the end. I could be anything, but not harebrained.
On paper after paper, I use every means of illustration possible—lists, graphs, calculations, flow charts—to ensure they understand. An hour passes. Some more time still. Then there’s head nodding. The barrage of questions ceases, we say goodbye, all smiles.
The smiles. That is something I have observed over and over. People appreciate it more when they feel they have a better understanding of what they are dealing with. Sometimes it does not even matter how grim their diagnosis, it feels better simply knowing what it is, how to deal with it, and perhaps something about why—such as genetic inheritance et cetera. I have observed that even those who don’t ask questions appreciate an explanation from doctors. Those who ask but are not answered-as often happens since doctors are too busy-feel let down. It doesn’t matter how good the treatment is. Taking the time to help them understand what they are suffering from, how to deal with it, their options going forward, the treatment and its implication and even how to adjust their social and occupational lives count more than simply giving them the correct prescription.
And that’s because humans are wired to want to know. When you thirst for knowledge, when that knowledge is about your health, your life, you experience a thirst no less powerful than the thirst for water. When it comes to matters of health, knowledge fits into that class of basic needs. This is especially so for those living with chronic conditions like diabetes and high blood pressure: who over the years may suffer less from their physical problems and more from the psychological toll it takes on them. And the worst part of this psychological torture, many admit, is not knowing what’s going on, let alone how to deal with it. After you have been dealing with a disease for so long, one which you know you will have till the end of your life (quite likely the reason for its end), you appreciate more being equipped with knowledge than a mere refill of your prescription.
I was late to get back to the wards. Late to start inpatient work, late to finish anything. I was certainly not yet ready to handle the torrent of emergencies which came with the night. Most, as always, being the last straws of poorly managed chronic diseases. For many, the best efforts wouldn’t save them. The pressure is ceaseless: So much undone work, a deluge of new cases, the knowledge that my efforts, my sacrifices, can change nothing for so many. That makes for a long and dreary night. There’s been too many of these already. This would have been yet another. But a meteor splits it into halves, lights up my gloomy interior, reminds me that in a world of complications and death, there’s a family that won’t go down that way. Who won’t run in the dark of night in futile efforts to save their kin from the deathly grip of complications. Who, no longer ignorant, can see there’s some light, a crack in the darkness, a splitting of the night side of life.
I couldn’t heal, but I could, and did, empower them with knowledge. If for that alone, I can count myself a doctor. I can face the night. I can take the next step to ensure this treadmill of a healthcare system doesn’t come to a dead stop. I know that if I could do nothing else in this woefully resource-restricted system, I can empathize. I can educate. I can empower.

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