Sultan passed away three days ago today. His condition had been rapidly deteriorating for six to eight weeks since the blood transfusions stopped. When he passed, the 27 year old Jamkhed resident was skinny as a stick, with bad bed sores on his back and arms (despite being moved into a waterbed), barely able to speak, with eyes as mellow but alive as ever. His nails were all raised, his tongue and eyelids pale, and his mother was reliably by his side. It is not the first time someone has died in the hospital since I arrived in Jamkhed, but Sultan was a particularly unusual case, considering he was active, happy and jumping around when I arrived in August.
Around eight years ago, Sultan went to a Jamkhed hospital presenting with kidney problems. He was treated for kidney failure but a side product of the toxic meds soon left him with aplastic anemia, rendering his bone marrow disabled in producing new red (and white) blood cells. Aplastic anemia is a very difficult disease to treat, requiring a bone marrow transplant available for a good amount of money, especially considering the risk after operation. Sultan, nor CRHP, could afford the transplant. Instead, he received blood transfusions every two weeks to reoxyginate his body. Oddly, even with the transfusions he would present with fever, chills, pain and vomiting. He was tested for malaria, typhoid, tuberculosis but none could explain the ongoing sickness, especially with the limited diagnostic equipment available in the hospital. Eventually, Dr. Shobha, Dr. Wout, Sultan and his mother sat down to discuss the options. They decided to take Sultan off blood transfusions and rest until death.
The healthy-looking Sultan soon became bed ridden, quiet and contemplative. He never seemed angry for the decision or for the chances and changes life had given him. There were few palliative medications to ensure he would live out pain-free besides the common pain meds. What seemed to do the most for Sultan, however, were the daily prayer sessions at his bed. During morning and afternoon rounds, the nurses, doctors and patients would stop, some holding Sultan’s hand or rubbing his leg while a nurse or doctor said a prayer. He would close his eyes, seeming to listen deeply, and then open them again to look at us afterwards. The prayer was not an excuse for lack of treatment but was in fact a constructive form of supplemental palliative care.
With Sultan I began to think deeply about the role of spirituality in medicine. It often seems like a taboo subject, a mixture of contradictions and worlds that should not collide. However, it also seems that spirituality should exist in health and the hospital as much as, if not more than, most anywhere else. The hospital is a place of life and death, healing and suffering, crying and laughing, of miracles and catastrophes, family and friends, love and closure, and of searching and retrospection. Something so important, so innate in a patient as their own health deserves to be accompanied by faith, by a belief in truth and security. Health is much greater than the pain and treatment that accompany disease or injury but involves equally mental and social well-being. For most, spirituality (in whatever form it may be) is a determining factor in this well-being which can greatly affect the patient’s compliance, motivation and success in overcoming the pain and disease.
Spirituality is different than religion, and it should not be used as a substitute for rational medicine or in the place of treatment, but it does deserve recognition and a place in healing. Sultan was dying – he knew it, his mother knew it, we knew it and, for him, God knew it. Is it wrong for the doctor to pray with Sultan, asking for his well-being after he leaves this earth? Was it not more comforting for Sultan to know that he was in the hearts and minds of those who were caring for him?
Spirituality, and especially religion, could be dismissed as counter-science and anti-medicine, but rather it is neither – it just happens to be most controversial when difficult decisions need to be made. Normally, though, spirituality helps treatment and medicine by supplementing it with a valuable service in a place where meds cannot reach. Sultan and his mother seemed to be at peace when he died, and I can’t believe it was the doctors, the medications or the hospital that did that for him. Rather, it seemed to be a faith in something larger than just himself and that he was far from dead even after his body left the hospital.
4 comments:
Quite a touching post. Sultan sounded like very a special boy. For me there is comfort in thinking there is a better place beyond. And in the end that is what everyone hopes for.
Stumbled across your blog while checking for 'spirituality'.
Four months in India is a real long time! You must have got to know the country well by now.
I write about India too. But it is from the perspective of someone born and brought up in this country. It is always interesting to read how foreigners view your country. Chased by beggars at India Gate, must have been quite an experience!
Very nice and touching post. A stark contrast to the way medicine is practised in US where even 90 year olds are subjected to a 5th translplant instead of the comfort of a better place beyond.
And this too at the cost of the pain to the patient and expense of the young who have to pay the price in the form of increased medical premiums.
NPR aired a program recently that tried to bring back some sense on how these decisions need to be made.
I appreciate the thoughtfulness in the way you told Sultan's story and in your consideration of the role of spirituality in healing. It made me think about my favorite Steven Levine quote that "healing is to touch with love what we could only before touch with fear." To me healing doesn't necessarily mean avoiding death, returning to the same state prior to illness or damage or to "cure". I think of it having to do with regeneration, grace and re-formation.
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