One never gets used to the idea that there is nothing one can do.
–Connie Willis, The Doomsday Book, 1992
by Annekathryn Goodman, MD
I was deployed to Nepal for three weeks after the April 2015 Earthquake as part of a first responder mobile medical team of the International Medical Corps. My 12-person team was helicoptered into remote, inaccessible mountain villages that had been devastated by the earthquake. We would set up a clinic, treat acute injuries, collect data on impending infectious disease epidemics, and triage severely injured earthquake victims for helicopter evacuation to Kathmandu. It was during this journey that I was confronted with the dilemmas of how to care for actively dying people when resources were not available.
The challenges after a natural disaster are complex and nuanced. There is a loss of civic infrastructure. Scarce resources include among others: medications, health facilities, and providers. There is also the terrible loss of family, food scarcity, and a lack of water and electricity.
The goals of first responders shift to acute care and includes saving lives, stabilizing injuries, and offering definitive therapy when possible. When a victim cannot survive, palliation of symptoms would be ideal if it is possible to do so. There is the tough business of triaging patients in this setting by whether or not they can be saved. The categories of triage range from immediate (immediate intervention will save the life), delayed (the injuries are not life threatening and can be treated later), minimal, and expectant. The expectant category is reserved for patients with devastating injuries where they will not survive or where the resources to help them are greater than what is available and even with the best care, their chance of pulling through is minimal.
In contrast to a disaster-restricted setting, tremendous expense is routinely spent for ill cancer patients in the hopes of giving them an extra 3 to 6 months of life. In addition, early palliative care intervention in a non-disaster setting hopes to improve symptoms, relieve suffering, and help patients with advanced and incurable cancers to transition in a gentler and more gradual way towards the inevitable end of their lives. During a mass casualty event, palliative care services directly compete with definitive or life-saving care. This leads to an altered standard of palliative care where pain-control and sedation is the main goal.
Nepal, a country of 31.5 million people where the average age is 22 years is an agrarian society and among the poorest countries in the world. Pre-earthquake, prescribing narcotics was illegal and palliative care was not a widely known medical concept. On 25 April 2015, a 7.8 earthquake rocked the country. A second 6.8 earthquake followed on 12 May. These earthquakes and the subsequent hundreds of severe aftershocks led to deaths, landslides, displacement, homelessness, and crop failure and food insecurity.
In this setting, my mobile medical unit treated over 2000 people during our three-week rotation. There were many cases of respiratory illness, dehydration, diarrheal diseases, pain, rashes, urinary symptoms, lacerations, fractures, pregnancy and gender based violence.
It was during one chaotic day that I met a 55-year-old gentleman whom I had to triage to the expectant category. I was in the middle of suturing a laceration when looking up I saw a group of people carrying a man down the mountainside in a large grain basket. Two years before, he had been treated in Kathmandu for bladder cancer and had undergone a pelvic exenteration, radiation, and chemotherapy. His family wanted him evacuated to Kathmandu. On examination there were multiple sites of tumor growing through the abdominal wall and he had developed a high output enterocutaneous fistula. His clothes were saturated by the fistulous output, and he was in obvious, tremendous pain. His family had been walking for two days to get to us.
It was an awful moment. I gently tried to explain through an interpreter that he probably would not last more than a few days and we could not send him to Kathmandu. His son and I bathed him and wrapped him in some chux pads that we had on hand. The family was incredulous and angry.
There are guidelines for the ethical approach to allocation of scarce resources and triage. The concepts to consider include accountability, transparency, consistency, and proportionality. There is the issue of fairness—to be inherently just to all people. And there is the public health concept of the duty to obtain the best outcome for the greatest number of patients with available resources. These issues confronted me with this poor gentleman and his family. I could not even offer adequate palliation of his and his family’s suffering.
I will always remember this patient and I bring back to our resource rich country some important concepts to consider in our care of cancer patients. The inability to give good care and alleviate suffering leads to moral distress among the providers. There is a balance of care and we must be thoughtful with treatment choices. On the one hand, we can cause harm with overly aggressive care that may be futile. In addition, beyond the individual patient, the inappropriate use of health care resources harms others who may not be able to receive care. However, the inability to at least manage symptoms is unacceptable.
There is a movement to develop a crisis standard of care during disasters. These standards are also worthy of consideration in a non-disaster situation. Critical resources go to those who will benefit the most. We must prevent hoarding and overuse of limited resources. Limited resources must be conserved so more people can get the care they need. We must minimize discrimination against vulnerable groups who cannot advocate for themselves such as the poor, the minorities, the elderly, and immigrants.
Ultimately, regardless of the context we must maintain the basic human values of compassion, empathy, and respect for the dignity of others and to maintain professional codes of conduct.
Dr. Annekathryn Goodman is a Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School and practices as a gynecologic oncologist at Massachusetts General Hospital in Boston. She is a member of the national Trauma and Critical Care Team a branch of the US department of Health and Human Services and has deployed to various international disasters including Bam, Iran 2004, Banda Aceh 2005, Haiti 2010, the Philippines 2014, and Nepal 2015. Since 2008, she has been consulting in Bangladesh on cervical cancer prevention and the development of medical infrastructure to care for women with gynecologic cancers.