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Socio-economics of Terminal illness!

Socio-economics of Terminal illness!

Terminal illness is a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death/disability of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma.  This can also be used in any case where the patient has multiple organ failure or reached end stage due to diabetes, kidney disease, septicemia or any other reason. It involves topics from economics to existentialism, and surgery to spiritualism. It requires education, communication, acceptance of diversity, and an ultimate acquiescence to the inevitable. While the patient and his family pushes the doctor and hospital to perform the impossible, irrespective of the cost to the family or nation or pain and annoyance to the patient, it is the patient who bears the brunt of multiple pipes and needles being pushed into his body parts for usually a dismal outcome. Most of these patients who are admitted to one or the other intensive care units go home at the end either as mortal remains, or discharged in desperation to die in the ambulance or home or disabled for rest of the life.  The lucky ones who go home with total or partial recovery are only a small percentage. Is this colossal waste of resources, worth the ugly outcome and what can be done to prevent this? Will a doctor allow this kind of butchery on his own body, if in similar situation? If not, why different standards for the doctors and others? In a study on relatives of critical patients, all respondents stated illness had forced them to sell assets or take loans. This is the worst form of medicalization, indeed.

Most doctors treat their critical patients rather aggressively, contrary to the allegation that doctors neglect the patients admitted in ICU. However when it comes to taking care for themselves, the doctors would not accept the same treatment that they give to their patients in similar situations. Cardio-respiratory resuscitation e.g. is brutal and in most cases not rewarding, since only a few survive the ordeal. Dr. Ken Murray states that most doctors would not opt for advanced and intensive therapy, since they consider it futile for themselves, but essential for others. Important variable is the wish and expectation of the family, who will always say, “Do whatever is possible till the last breath”. In these litigant minded times the doctor will keep on doing something on the patient just to escape the blame-legal or otherwise. The patient will get cut open repeatedly, hooked to one machine after another, perforated with pipes of various types, bleeding till last drop in the name of investigations and then blood transfusion, dialysis, ventilator and so on. What a dehumanizing scenario to fulfill the wishes of the relatives that are often based on show off rather than wish of recovery. In case of a doctor as patient, the expectation is more realistic, since the doctor-patient can explain the implication and calms down the expectations of the relatives. They often refuse chemotherapy and invasive tests, which they find of no use to themselves. 58% of the patients in the UK die in hospitals-since most of them have the facility of hospitalization available, but India most patients cannot clamor for even a hospital bed.

The American Society of Critical Care Medicine  indicate that there is a pressing need for physicians working in the critical care environment to intimately understand problems and impediments to physician communication to patients and families, as well as physician performance in the arena of end-of-life. It is important for a physician to recognize the dying patient. This is essential not only because the physician has to be involved with an end-of-life plan, but because only about 45% of patients actually recognize that they are, indeed, dying. The ability of a physician to prognosticate accurately has profound impact on the socio-economic aspects of the family, society and nation. There is a need for paradigm change in the law and approach by judges that doctors and others are not held guilty of negligence after a considered opinion is given about the futility of carrying on the treatment when there is no hope of cure. In fact such doctors should be suitably rewarded who help to bring peaceful end and protect nation’s resources for those who stand to benefit from them.

 

Prominent symptoms in the dying patient include, but are not limited to, pain, breathlessness, difficulty managing secretions, restlessness, depression, dementia, restlessness, agitation secondary to pain, hypoxia, or anxiety. Knowing when to let go as a provider and helping the family let go of their loved one can be onerous. Can a poor country like India allow squandering its limited hospital resources either for the greed of the hospital or whims and fancy of the family? Why the doctors in emergency department or ICU lose their sense of responsibility towards the socio-economic realities of the patient? We have noticed in several cases of this nature being recklessly prescribed medicines, tests, and disposables rather liberally, bordering callousness. Why to force the family to spend the last penny from their coffers and even borrow from friends or to mortgage the only house built by the dying patient, after his retirement?

If a physician can counsel the relatives about the impending death and futility of carrying on aggressive and expensive treatment, well in time, it can go a long way to save the family and the patient from avoidable problems. I believe such assessment should be possible, if not by a single physician, may be by board of doctors or ethics committee of the hospital. The hospitals need to educate their doctors on this.

 

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