Chapter 19. How to deal with incurable disease?

Dr. Yeshwanth K. Amdekar, DCH, MD (Pediatrics), FIAP

Never must the physician say disease is incurable, nature

has hidden powers and mysteries

                                                            –Morris Fishbein

I don’t have a choice about incurable disease butthere are

other choices in life to make

                                                            -Michael Fox

 

Concept of “cure”

Word “cure” comes from Lain word “cura’ meaning care, concern or attention. Rational medical practice includes care, concern and attention in the management of every disease. Thus, in literary sense, it should be possible for every doctor to “cure” every disease. However general expectation of “cure” refers to healing of damage caused by disease with complete functional recovery and regaining original state of health. But in medical parlance, “cure” is considered when there remains no evidence of active disease at the end of complete treatment irrespective of persistent functional disability.

What is incurable disease?

Medically speaking, disease is considered incurable when no more medical intervention is likely to help further recovery. However there exist non-pharmacological and non-surgical modalities of treatment other than medical interventions and doctor should not give up before trying them. For example, Down’s syndrome cannot be cured but such a child can be helped in various other ways such as physiotherapy, occupational therapy and other rehabilitation measures and can lead a near normal life. Many diseases are controllable even if not curable and if well controlled, person can lead normal life with or without continued management. Diabetes and asthma are common examples of such controllable diseases. Many immunological disorders may get into remission by itself or by immune-suppressive drugs and remission may last even forever. It is important for all of us to realize that it is patient’s immune system that cures the disease, albeit with the help of a doctor and his treatment modalities. However, if immune system does not act favorably, even completely “curable” infections such as Tuberculosis may be fatal due to immune-mediated complications. Thus, it is clear that incurable disease may still be treatable with the hope of natural control if not cure. By convention, incurable disease suggests bad prognosis for life. However correctly speaking, it means science is unable to cure but proper management, immune system, nature or even luck or destiny may be able to control if not cure.

Finally, today’s incurable disease may find cure tomorrow. Recently stem cell transplant or specific organ transplant has offered “cure” in increasing number of disorders.

Dealing with incurable disease

Once the disease is considered to be incurable, next step is to find out whether disease can be controlled or at least disease progression can be slowed down. In all such situations, aim is to make the patient as comfortable as possible with quality of life maintained to an extent feasible. This is done by nutritional support, hygienic measures, relief from pain if any and psychological boosting provided by family and friends. All such measures can make a difference in ultimate outcome.

Counselling a patient with incurable disease

Counselling refers to guiding and offering moral support to a patient so as to help him go through the ordeal. It is well known that mind helps the body to recover. Counselling is an art that is to be learnt by oneself. Unfortunately, it is not taught in medical schools. One should not consider helplessness even in incurable disease. Finally, “I treat and he cures” is the faith in our religions that most patients understand. Relatives must be informed fully about the incurable disease but not the patient directly. It is enough for the patient to know that you have not given up because you have seen many of such patients recover well. Once the patient knows that his doctor is with him, it gives him moral boost. We owe that much to our patients suffering from incurable diseases.

Personal notes

Every doctor faces a challenge to deal with incurablediseases. In such situations, empathy plays major role. I recall an infant suffering from fatal neurological disease (spinal muscular atrophy) who would not see his first birthday. Even when diagnosis was certain, I subtly prepared parents over next few days to anticipate the inevitable outcome before announcing incurable disease. It is said that time heals.

Within a week, parents asked me to ensure a painless death for their infant. In another incidence, a baby was born totally paralysed without myelin – the insulation cover to the nerves –another incurable fatal condition (congenital amyelinosis) and I knew that survival would depend on mechanical ventilation for life and hence impractical. It took some time to confirm the diagnosis and literature search revealed handful of such cases in the world and none had survived. But parents would not accept the diagnosis because their family astrologer opined that if life was maintained on a ventilator for a month, this baby would improve on its own. We did cooperate with their wish and ultimately, they accepted the inevitable. In this case, disconnecting a ventilator amounted to killing the child and we had to take legal advice before disconnecting the ventilator that also meant medical opinions from unrelated experts. But there are times when survival if at all, would be in a vegetative state and in such a case, relatives need to be counselled to consider signing DNR – “Do not resuscitate”

Take home message

Incurable disease is still treatable though may not be with specific curative drugs. There are other types of support such as nutrition, hygienic measures, pain relief, physiotherapy and psychological boost and they all help to offer comfort. Counselling a patient is an important part of management and knowing that doctor is around for any help makes the patient feel better.

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