The Importance of a Cancer Patient's Reasonable Right to Privacy : Oncology Times

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The Importance of a Cancer Patient's Reasonable Right to Privacy

Galamba, Elizabeth Rose

Oncology Times 45(10):p 29-30, May 20, 2023. | DOI: 10.1097/01.COT.0000936860.95552.87
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Patient Privacy

Among the Oscar-worthy movies nominated in 2023 included Black Panther: Wakanda Forever. It was submitted for five awards: Actress in a Supporting Role, Costume Design, Makeup and Hairstyling, Music (Original Song), and Visual Effects. It isn't surprising that this feature was nominated in these categories. Beyond Angela Bassett's performance as Queen Ramonda, the film is particularly beautiful, both visually and in meaning, a beauty that reveals itself quite early in the film, during King T'Challa's, the Black Panther's, funeral.

This bright and lively scene, which embraces and reflects African culture, is full of song, dance, and celebration, despite T'Challa's sudden death from an incurable disease. The emotion driving this scene, seemingly inspired by the world's grieving of Chadwick Boseman's passing, provides the audience the opportunity to celebrate his life, while opening a platform to answer everyone's burning question: How will the Black Panther franchise continue, despite Boseman's noticeable absence?

When Boseman died on August 28, 2020, his death came as a shock to many. Subsequently, when it was announced that Boseman passed away due to Stage III colon cancer, the industry and Boseman's fans were heartbroken and perplexed: When had Boseman been diagnosed? Why didn't anyone know?

In 2016, the same year Boseman brought the Black Panther to life on screen, the actor was diagnosed with the disease that would end up taking his life. Upon his diagnosis, Boseman chose to keep his cancer and his treatment private. Besides his closest family members, no one knew Boseman was ill. To his friends, his colleagues, and the public, Boseman was a healthy man breaching Hollywood's Ivory Tower.

Recently, Oncology Times sat down with Julia Ruark, MD, MPH, a psychiatrist at the Fred Hutchinson Cancer Center, to discuss why patients choose privacy during a time of medical crises like cancer.

“There are many reasons why people choose what they choose,” Ruark said. “Cancer is such a time of crisis that it can bring up many complicated emotions for people. If a person chooses to keep their diagnosis mostly private, there are likely a lot of different reasons that come into play there.”

This decision can stem from a patient's past experiences, particularly if one of their loved ones also fought cancer. For example, they may have seen how their loved one's diagnosis affected other family members and, because of this, they do not want to incite the same grief and fear.

“In most of the cases that I have worked with, it's a form of protection and that often means protecting their loved ones,” Ruark explained. “Patients choose, very intentionally, not to tell people because they do not want to create fear and devastation in the people who love them.”

On the other hand, patients may choose to keep their diagnosis private as a form of self-protection. “Having cancer is a medical crisis and it requires someone to be emotionally vulnerable when they share this information with another person,” Ruark explained. “Understandably, many people prefer to not share such personally intimate information.”

This choice can also stem from a patient's previous knowledge of the vernacular surrounding cancer and treatment: “You have to be a fighter” or “Just think positive” are two examples Ruark cited. Privacy serves patients in avoiding this vernacular or judgments other people may make of them. “They don't want anyone to think of them as victims,” she noted.

Regardless of a patient's reasoning, however, Ruark explained that it is rare for a patient to keep their diagnosis completely private. Like Boseman, patients typically choose a small group of trusted family members or friends to disclose to. Deciding who to tell is a very intentional decision. Often, patients look for people who they know will be able to support them without judgment or burden.

In this context, “burden” can mean a couple of different things. Patients don't want to burden their chosen loved ones with this news. On the other hand, they don't want to be burdened by overwhelming support from their loved ones, such as daily texts and calls. So patients choose people whom they believe can handle the news.

“When you have cancer, you sometimes really, really need other people,” Ruark stressed. “You need help from people to drive you to appointments or to stay with you after an infusion. So sometimes patients feel like, ‘Well, who is the person I feel least bad burdening with this news? Who, also, will genuinely be able to help me?’ So that is who they would tell.”

This begs the question: Can choosing privacy force a patient into isolation? Feelings of isolation typically occur, when a patient's choice to remain private is rooted in fear. Particularly, if a patient thinks that their diagnosis will devastate a family member or close friend, they are more likely to experience isolation and increased feelings of fear and anxiety.

“Whenever I am working with a patient around these types of issues, I'm trying to sort out if it is a rational, understandable, likely psychologically helpful reason that they're keeping it more private?” Dr. Ruark noted. “Or is it coming from a place of anxiety or fear or depression? If that is the case, then how can we work through that, in a lot of different ways, to help patients make sure they get the help and support they deserve.”

When a patient experiences isolation, whether through choice or circumstance, there is a variety of options a patient can pursue to stay connected with others. Simply attending cancer clinical appointments and meeting with oncologists and nurses can decrease possible feelings of isolation. Also, many cancer center clinics, like Fred Hutchinson Cancer Center, have supportive services, such as social work, psychology, psychiatry, and palliative care to provide patients with emotional support and connect them with other resources. Patients can also connect with the Cancer Lifeline network if they are interested in joining support groups, taking classes, or trying out different kinds of therapies, such as art therapy.

Cancer can mean many things to many different people, and how a patient responds to their diagnosis is unique to the individual.

“Often, people have a lot of assumptions about what it means to be a cancer patient,” Ruark explained. “I do not know Chadwick Boseman, but my hypothesis is that perhaps he didn't want to be defined as a cancer patient. He was a very talented actor and was at the height of his career. I would suspect that he didn't want anything to take away from that or didn't want to necessarily have the sympathy or pity of others, because for a lot of people having cancer is just part of who they are. They don't want it to be what others see as their full identity, but once people know that someone's a cancer patient, it can genuinely be hard to remember the other parts of them.”

In death, as in his life, Boseman is remembered as a talented actor, who contributed much to diversifying Hollywood. In his roles as Jackie Robinson (42), as Levee Green (Ma Rainey's Black Bottom) and, of course, as the Black Panther, Boseman brought Black history to the screen and was a key figure in changing Hollywood's perceptions of what a Black actor/character can be, which is much more complex than the stereotypes traditionally placed upon them.

Many mourn Boseman's talent and what the world has lost now that he is gone. We remember him for his acting and his inspiration, and we curse the cancer that took him from us. However, we don't remember him as a cancer patient; we remember him as a role model, as a fierce hero. Not because of his sickness, but because of his willingness to break boundaries in the face of any adversity, including Stage III colon cancer.

Elizabeth Rose Galamba is a contributing writer.

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