Posted by Duncan Maru, MD, PHD
In Achham, Nyaya Health’s work seems to be a constant battle against death. After all, we are confronting some of the highest infant and maternal mortality rates in the world. As we have discussed on this blog in our mortality reviews, we so often fall short of our goal.
There is another side of death that we face more frequently in the United States, which is how to determine compassionate care when death is imminent or inevitable. These decisions often run counter to our aspirations as healthcare providers. We believe that we can and should cure disease. Yet continuing to maintain this curing mindset for patients nearing the end of their lives, makes us guardians of death rather than protectors from suffering. Our patients suffer as a result of our aggressive, futile interventions. If the heart is failing, we have multiple mechanisms of cardiac resuscitation; if the lungs are dying, we have mechanical ventilation; if the kidneys have stopped working, we have dialysis. All of these interventions are life saving in the appropriate setting. In the some scenarios, however, they merely contribute to a loss of dignity and an increase in suffering. The macabre term that medical residents often use for this is “flogging.”
One of my senior residents recently shared a New York Times article which broaches the questions above through the author’s account of her father’s passing. In “What Broke My Father’s Heart“, Ms. Butler describes her struggles with her parents and a medical system ill-equipped to help people live their last days according to their beliefs and aspirations. Her piece reminded me of many patients whom I had treated, who had been denied a humane and dignified death by a medical system driven to cure above all else. In our noble search for cures, we often do harm to vulnerable people at the ends of their lives.
I am also reminded of my own father. He died in his sleep of the sequelae of congestive heart failure. A condition that doctors could have treated, but that would have bound him to a lifestyle that was incompatible with his spiritual and philosophical beliefs. He refused such a fate. In the last year of his life, he continued to run, spend time with his family, see patients, and attend conferences on spirituality. Two months before he died, and shortly before I began college, we went on an amazing spirituality retreat together. That week was a true blessing, and one I will carry with me for the rest of my life. Then 18 years of age, I had such difficulty forgiving him for rejecting a medical system that could have cured him and prolonged his life. Yet now, at the end of my medical internship and as a witness to the pain that our attempted cures often inflict upon people, I have come to accept and respect his position.
The oft-repeated argument from doctors is that families have a hard time letting go. I am mistrustful of this stance. In fact, this belief often leads healthcare providers to be more aggressive than our patients’ sensibilities would incline us to be. End of life decisions are heart-wrenching for families. There is rarely a correct path and the choices are never clear. We doctors could better explain what different medical interventions truly entail, yet we often struggle to do so. Our healthcare system could do a better job educating and supporting families. Even this early in my medical training, I often find myself unable to quiet the credos of our medical system enough to truly consider the perspectives of my patients. There is a plethora of medical interventions that we have ready access to, and it is hard to come to terms with the concept that in some cases, less is more.
In Achham, on the other hand, the predominant challenge is to fight feelings of fatalism. I remember what could be considered Nyaya Health’s first death. She was a young mother with advanced AIDS, who appeared in April 2007, one year before we would even open clinical service. I later wrote about her death on this blog with the following preface:
“It is a story that I will carry with me for the rest of my life, about how the perfect storm of poverty, female disempowerment, and HIV brought about the undignified, horrifying demise of one young woman. It is also one that I am ashamed to recall, since I without question made the last day of her life even more terrible.”
I feel those same emotions today. I continued:
“She was seated on the first floor of her clay house, about 8 feet above a pile of excrement and refuse. She was wasted, delirious, tachypneic, incontinent, eaten by flies, and, it seemed, on display for the whole village. She was being barely taken care of by her half-blind elderly father-in-law. It was hard to imagine a more undignified way to suffer and die. It epitomized the pestilence-as-punishment meme that has had so much traction throughout human society.”
Despite our efforts, she died the next morning. We tried to help her, but created a spectacle of her condition instead. We, her caretakers, felt that we had failed her. Our cures were unhelpful and brought her greater shame and indignity. Her death was a great loss and a great lesson. It inspired us to establish an antiretroviral program at Bayalpata Hospital, and drives us to prevent inhumane deaths from ever happening under our care again.
Here in the United States, I have begun sharing copies of Ms. Butler’s article with patients whom I feel it might benefit. One patient, who is well over eighty years old, mentally and physically active, and thankful for what he calls his own ‘blessed life,’ presented to the emergency department with a potential heart problem. Diagnostic tests quickly indicated that he would require an invasive procedure. His reservations were apparent. I handed him the article and, together with his family, had a candid discussion about the benefits and burdens of medicine. Ultimately, consent to the procedure rests with him, his family, and his heart doctor, and I do not know which direction they will choose. Yet, I do know that he appreciated the opportunity to ask tough questions and make difficult decisions with the earnest support of his healthcare providers. For him, I felt less like a guardian of death and more like a facilitator of dignity.
Facilitating dignity is the bond that ties healing professionals together. It is the impulse that helps guide us away from flogging or fatalism. From saving a young mother’s life from post-partum hemorrhage in Achham, to providing humane end-of-life care in the United States, the desire to honor life, health and individual beliefs tie us all. Three years ago, those feelings seemed to escape me when we were so powerless to cure and provide dignity for our AIDS afflicted mother in Achham. Yet, with the right tools–curative medicines in even the most impoverished places–and the right mindset–humility and humanity in the face of death–I do have hope that, we in the healing professions, whether at hospitals in Bayalpata or in Boston, can find solutions to suffering.
