Making the Patient Part of the Clinical Conversation
“You can’t have true patient-centered care unless you make the patient an active and meaningful part of the conversation,” said Suleika Jaouad, Emmy Award–winning writer, advocate, motivational speaker, and cancer survivor, at the 2016 Association of Community Cancer Centers National Oncology Conference.
The summer after college graduation, Ms Jaouad had dreams of becoming a war correspondent. Before she was able to report on a burgeoning revolution in Tunisia, her life was interrupted. She currently writes the column “Life, Interrupted” in The New York Times.
“On May 2, 2011, nothing of note was happening in the local news, but the world I knew was about to implode,” Ms Jaouad said. She had undergone a bone marrow biopsy because of recurrent infections and unexplained frailty: because of her young age, her physician reassured her that nothing was seriously wrong. To her surprise, the biopsy revealed she had acute myeloid leukemia (AML) at age 22 years.
Lack of Communication, a Breach of Trust
Ms Jaouad knew the importance of understanding what lay ahead, but she often felt too overwhelmed, intimidated, and sometimes embarrassed to ask her medical team to explain and re-explain basic oncology terms. So, like many patients, she turned to the Internet.
While researching the side effects of the chemotherapy she was scheduled to begin receiving, she found something that shocked her “even more than the news of the diagnosis itself, the word ‘infertility.’ The reason it shocked me is because no one on my medical team had mentioned this to me,” Ms Jaouad explained.
“I hadn’t begun to think about having a family, but I knew that preserving my ability and choice to be a mother felt like a very important lifeline to an already very uncertain future,” she stated. The absence of communication on something so important felt like a breach of trust early on in her treatment.
She discussed this with her medical team, and they agreed to delay her chemotherapy and connected her to financial resources to cover the cost of freezing her eggs, which would have been prohibitive otherwise. Ms Jaouad calls her 10 frozen eggs her “totsicles,” and says these eggs showed her early on that clear, open communication with the medical team was not always going to be a given.
“The totsicles showed me I was going to need to take an active role in my care in order to better advocate for myself,” she said. “But more than anything, they showed me that words like ‘value’ or ‘cost’ mean very different things to different patients, based on their age, their background, and their stage in life.”
Cancer Under-recognized in Young Adults
Each year, 70,000 young adults aged 15 to 39 years are diagnosed with cancer, and despite the increases in pediatric and adult cancer survival rates, young adults have shown close to no improvement in their cure rates in the past 2 decades. Ms Jaouad calls young adults “oncology’s tweens,” because they are a few years too old for pediatrics, but decades younger than many other patients in the adult oncology unit.
Ms Jaouad said that she did not relate to most of the other patients on the floor where she received treatment, and she did not see herself in the statistics and research associated with her disease, which typically affects individuals in their 60s and 70s.
“But in the past few years, through my writing and through the stories of my new friends in the cancer community, it struck me just how much young adults are a misunderstood and overlooked part of the cancer equation,” Ms Jaouad emphasized.
Clinical Trial Can Be a New Lifeline
At the end of her first summer of treatment in 2011, Ms Jaouad’s biopsy results showed that her cancer had become much more aggressive, and she was facing bone marrow failure.
“It probably seems naïve, but it hadn’t occurred to me, with all of the progress in cancer research, that I might find myself in this situation,” she said. Her chance of becoming well enough for a bone marrow transplant was becoming less likely, and at age 22, she started to consider the possibility that she might never be cured. “But that’s when I learned of something called a clinical trial,” she said.
She was “terrified” to enroll in the phase 2 clinical trial recommended by her care team, because it sounded like a shot in the dark. “As much as I was for scientific research, I had no interest in being a guinea pig. I wanted proof and evidence that the cancer treatments were worth the havoc they wreaked on my mental and physical health,” she said. “I wanted a cure, not a trial.”
Despite her hesitations, she enrolled in the trial, and within 8 months her cancer was in remission enough to move on to the bone marrow transplant. She says the clinical trial saved her life, but it didn’t come without serious medical and financial toxicities.
No nearby hospitals were offering the trial, so she had to make an 8-hour round trip to a hospital in New York City several times weekly. Eventually her family had to relocate to the city, because of the excessive commuting.
Financial Burden an Unmet Need
Young adults are the largest uninsured and underinsured group in the United States, but even for those with “good” health insurance, the cost in dollars, stress, and time is incredibly high, Ms Jaouad said.
“In the 3.5 years I spent in treatment, the costs of relocating to a new city, out-of-network charges, copays, and the loss of my income and my mother’s reached hundreds of thousands of dollars not covered by insurance,” she said.
Although she considers herself fortunate that the financial burden did not bankrupt her family, Ms Jaouad found that many other patients have had to choose between rent and groceries, and life-saving treatment.
“There is a very real unmet need for families around this country when it comes to finding affordable, quality, and accessible health care,” Ms Jaouad said.
Although she never became a war correspondent, Ms Jaouad decided to “report from the frontlines of my hospital bed, on a very different kind of revolution, and to give voice to a group of people who are too often voiceless, young adults with cancer.”
“I’m incredibly grateful to be able to continue figuring out how to focus on the ‘life’ part of that ‘Life, Interrupted’ equation,” Ms Jaouad said. “But the truth is I wouldn’t be sharing my story if it weren’t for a cancer community that cares and acts on its caring.”