There is a tragic reality in global pediatric oncology that physicians in resource-constrained settings see every day: after a child with cancer starts treatment, many families leave and never return. Even when lifesaving treatment is available to the kids, there is no guarantee that they will receive treatment and be cured. Children die from their disease, not because treatment is inaccessible, but because it is not accessed. Unfortunately this situation is common enough that the global oncology community has given it a specific label – treatment abandonment.
Treatment abandonment is formally defined as a failure to begin treatment or a departure from treatment for a length of 4 weeks or more . The proportion of families who abandon treatment varies depending on the context, but it is not uncommon to see rates as high as 50% to 75%. One recent paper estimated that 26,000 children will abandon treatment each year in low- and middle-income countries, which is roughly equal to the total number of pediatric cancer cases diagnosed in high-income countries yearly .
How do we explain this staggering statistic? Is it conceivable that a family makes a decision to forgo treatment for their child? Or perhaps are there failures of the healthcare system to sustain affordable access to care? One might postulate many reasons for this phenomena but the reality, as is often the case, defies easy answers.
To understand treatment abandonment is to understand the story of how a family experiences cancer. An example of the meteoric impact of a diagnosis on a family is the best way to illustrate this point:
Pablito was a five-year-old boy who lived with his mom and two younger sisters in a poor rural village in southern Honduras. He liked to do things most little boys like to do – kick the football around in the street, chase his sisters with bugs, and help his mom care for their chickens. One day he developed a fever and became very pale. Over the next two weeks the fevers didn’t stop so his mom took to the clinic in his village where he saw a nurse who decided to send them for blood tests at the nearest hospital.
It was two days before his mom could secure a vehicle to make the two-hour journey to the hospital, which actually took four hours because it rained and the dirt roads leading out of the village turned to mud. At the hospital they took blood from Pablito. After a few hours, a somber looking doctor told his mom that they were concerned he had a life-threatening illness, a blood cancer called “leukemia”.
Pablito’s mom had a 3rd grade education and had rarely seen a doctor herself before this time. She also primarily spoke an indigenous language of her village and was merely conversational in Spanish, her doctor’s primary language. He spent an hour talking to her about many things, much of it she didn’t understand, but she knew it was a disease in his blood and she knew it was life threatening.
The doctors started treatment in the hospital, and after a few days Pablito started looking much better, almost back to normal. He was discharged from the hospital and told he had appointments to come back every week for the next several months. Their family had government insurance that covered part of the hospital stay, but they would still have to pay a small sum for each of the upcoming appointments. Pablito’s aunt and uncle stayed in the city where the hospital was located, so he and his mom moved in with them, their 4 kids, 2 dogs and a coop full of chickens. Pablito’s sisters had to stay with their grandmother back at the village.
His aunt was convinced that he was cured. He looked fine, she would tell his mom, how could he possibly be sick? Plus, she would insist, many doctors are greedy and keep giving people medicine to make more money. Over time, his mother did notice that Pablito seemed to look sicker after visiting the doctor and receiving infusions. Perhaps his aunt was right, she would think to herself.
By week 10 of treatment, Pablito’s mom felt she was near a breaking point. The family’s money was running low, and she had lost her job because of her long absence, so they were dependent on support from her family. Living in the full house with their relatives was tough because it was cramped and noisy and the family felt like a burden to their relatives. Pablito was sick most of the time, and would cry at night because he missed his sisters.
His mom tried to talk to the doctors several times about their difficulties, but she felt she didn’t get her point across in her broken Spanish and they encouraged her to keep pushing ahead.
Eventually, his mother heard about a traditional healer near their village whose treatments were much cheaper. She talked with several family members who told her the traditional healer had helped them when they were sick. This was enough to help her make the decision. That day they packed up and returned to their home. They said nothing to their doctors, nor did they return.
This narrative illustrates the corrosive effects of cancer on the whole family. Financial difficulties are often present at diagnosis or develop over time and are a major contributing factor to treatment abandonment. Geographic barriers such as long travel time or displaced living arrangements add stress to a situation that is already difficult to navigate. Families are often forced to lean on a network of extended family and friends, which itself can turn into a stressful source of friction as compassion fatigue and sharing scarce resources strains relationships. Language barriers between families and the treatment teams can prevent a therapeutic relationship from forming, and low education levels can amplify miscommunications and misunderstandings. Families might not have a cultural framework that allows cancer to be easily understood, making alternative explanations for the disease and alternative treatments, such as traditional medicine, very attractive, especially when the treatments do not come with the expense and duration of formal medical care. These are just a few examples that illustrate the headwinds blowing against families while they navigate the turbulent waters of cancer treatment.
As medical providers, to address treatment abandonment we have to understand the unique experience of cancer treatment from the family’s perspective. Just as an errant crosswind can blow a boat off its course, we have to understand the forces pushing families in directions that affect treatment outcomes. These winds can rock the family’s boat, slow its progress, push it in a different direction, and, if blowing violently enough, overturn it completely. The medical team has a choice – to watch the winds blow from the safety of the shore or to help the family stabilize their path and safely navigate these tempestuous waters.
 SIOP abandonment position paper: http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(11)70128-0/abstract  Estimate of TA incidence: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0135230