Patient Education

Discussing cancer with a beloved person can be a delicate and complex task, especially when we initially learn of the cancer diagnosis or prognosis. We may struggle with the question of whether it is wise to disclose the truth to the patient and potentially negatively impact their emotional well being. At times, we might opt to withhold the information for various reasons, such as:

• A desire to shield our loved one from distressing news.
• Concerns about their emotional resilience in the face of such news.
• Apprehension that they might develop depression upon learning the diagnosis.
• Fear that they may lose their motivation to continue living.
• Viewing the diagnosis as a grim "death sentence" for them.
• Belief that they are either too young or too old to comprehend the situation fully.

These actions are driven by love and the desire to shield a loved one from the distressing realities surrounding their illness, both in terms of diagnosis and prognosis. While the truth can be painful, the consequences of deception may ultimately inflict even greater harm.

Myth or Fact: “If left unspoken, he/she remains unaware.”

A cancer diagnosis frequently triggers emotional and psychological shifts in both the patient and their family. Efforts to conceal this news can result in changes in how family members communicate, which may become apparent to the patient. For instance, when a patient inquires about the noticeable physical changes she has observed, the family might sidestep the question and shift the conversation to another topic. Alternatively, in certain situations, the patient may become aware of hushed discussions occurring among the family members.

The nature of cancer typically involves noticeable symptoms and physical changes for the patient, such as weight loss, pain, fatigue, or other indicators that raise suspicions about a more serious health issue. Some individuals are highly attuned to their bodies and may intuitively sense that something is amiss. Even without explicit information, they may pick up on cues hinting at a more severe health condition.

During appointments or treatments, interactions with other patients may occur. Conversations about treatments and symptoms among patients can occasionally disclose the diagnosis unintentionally. Patients often exchange information and provide mutual support, and a careful listener may pick up on the cues that point to a cancer diagnosis. Moreover, details such as the clinic's name, the nature of medical appointments, and overheard discussions in healthcare settings can strongly imply a cancer diagnosis. As a result of perceived secrecy or manipulation of information concerning cancer diagnosis and prognosis, attempts to disguise the purpose of medical visits may become increasingly challenging over time due to growing distrust.

“How does keeping secret affect the him/her?”

Keeping such information hidden can result in significant effects, including a heightened sense of isolation, fear, and uncertainty. This isolation goes beyond physical separation; it encompasses the sense of being disconnected from essential knowledge crucial for navigating the challenges posed by cancer. For instance, a patient might experience unexplained stomach pain, but without being informed about the cancer condition, they are left in the dark regarding the cause of the discomfort. As a result, patient is struggling to connect the dots and understand the root causes of the pain. The confusion and lack of information can leave them feeling profoundly alone on their journey, with no one to talk about their experiences or challenges they are facing.

Unawareness of their condition intensifies fear and uncertainty, leading some patients to turn to those in their social circle, such as relatives, neighbors, or friends, for answers. Whether directly questioning others or not, they accumulate information by drawing from what they have heard about cancer, forming their own understanding that may diverge from the actual situation. In certain cases, individuals may gather information from television programs or newspapers, adding complexity and potentially receiving inaccurate details tailored to their specific condition.

For those who are tech-savvy, there is a tendency to search for information online through websites or social media to address their questions. However, relying on online information carries unintended consequences, including the risk of encountering misinformation. Online sources may not consistently provide reliable or up-to-date information, making it challenging for patients to distinguish trustworthy sources from unreliable ones. Consequently, seeking information online may result in receiving inaccurate details that do not align with their specific medical circumstances.

Furthermore, in the absence of accurate information about their medical condition, patients may inadvertently visualize worst-case scenarios. Filling the void with their own interpretations, they often envision outcomes that are more distressing than the reality of their situation. This can significantly heighten levels of anxiety and distress as the patient struggles with uncertainties and negative projections.

As patients are intentionally shielded from vital information and meaningful discussions, they remain unaware of the seriousness of their condition. Simultaneously, family members may view the necessity for essential conversations as unimportant, driven by discomfort or fear, especially when the topic involves death and dying. This reluctance to address the matter may derive from a hesitancy to broach difficult subjects, and sometimes, avoidance of the impending reality of death and dying.

Consequently, there is a lack of awareness concerning the urgency of attending to significant matters such as legacy work, estate planning, and financial affairs while patients are still able to do so, taking into account the prognosis. In certain situations, when everything is carefully kept within a secret bubble, patients are caught off guard, unprepared for the imminent and unexpected arrival of death. This can lead to unattended matters, unresolved issues, and unfulfilled wishes.

Family members, feeling a sense of responsibility, make a conscious decision to conceal the medical condition, believing that shielding the patient from the full extent of the medical situation is an expression of care and protection, aligning with the filial duty to preserve emotional well-being and hope for the patient’s recovery. Additionally, conflicts among family members regarding treatment preferences may contribute to the choice of keeping the medical information undisclosed. This responsibility to keep a significant secret may trigger feelings of guilt, contributing to a more intricate grief process for the family. Following the loss, those family members involved in the collusion may struggle with regret, pondering 'what-if' scenarios.

Guilt may weigh heavily on them for not being completely transparent with their loved one, potentially depriving the patient of them opportunity to prepare for the future, express preferences, and participate in decision-making for themselves. This introduces an additional layer of challenge for family members when it comes to decision-making. The absence of guidance complicates the decision-making process, particularly when family members hold differing opinions, rendering it more challenging and emotionally taxing for the family.

To summarize, a cancer diagnosis brings about substantial emotional shifts in patients and their families, and concealing this information can inadvertently cause more harm than good. Here are some key points to take away from the article.

1. Patients may sense secrecy when inquiring about physical changes related to cancer, and
   symptoms may raise suspicions even before a formal diagnosis. Interactions with other
   patients and cues during medical visits may inadvertently reveal the diagnosis.
2. Keeping the cancer diagnosis hidden heightens isolation, fear, and uncertainty for the
   patient, who might resort to social circle or online sources, risking misinformation. The
   absence of accurate information leads to patients imagining worst-case scenarios,
   intensifying anxiety.
3. Excluding the patient from critical discussions about treatment and end-of-life decisions, along with withholding the diagnosis and progression, family members may feel guilty, and it complicates the grieving process. The absence of patient guidance in decision-making, especially with differing opinions among family members, adds emotional strain.

Written by:
Ms Jaclyn Lee, Supportive and Palliative Care Clinician, OncoCare Cancer Centre