Oncology, the branch of medicine dedicated to diagnosing and treating cancer, is a realm that thrives on the symbiotic relationship between doctors and patients. In the intricate dance of clinical encounters, oncologists act as guides, illuminating the path with their expertise and experience, while patients embody resilience and courage in their journey towards recovery. This relationship, marked by trust, respect, and compassion, often extends to include the patient’s family and caregivers.
Despite the best intentions, the dynamic nature of cancer and its unpredictable trajectory can lead to difficult conversations, misunderstandings, and, at times, strained interactions. As an oncologist, I have navigated my fair share of these turbulent waters, from sharing devastating news with a patient to managing the shock and grief of uninformed family members.
Let me share a specific instance that profoundly impacted my approach. It involved a dedicated wife who was always present at her husband’s appointments but never fully communicated his progressive condition to their family. When the disease reached a point where palliative care and home hospice were the next steps, the family was taken aback. The resulting barrage of phone calls, urgent clinic visits, and extensive discussions were taxing for all involved, demonstrating a clear need for open and regular communication from the outset.
In the hope of fostering a more understanding, supportive, and respectful environment, here is a list of seven behaviors that are counterproductive in the oncology setting. Recognizing and avoiding these can help maintain a positive patient-oncologist relationship and create an environment conducive to effective communication and care.
Questioning treatment decisions without full knowledge:
Second-guessing your oncologist’s decisions without understanding the full medical context is detrimental. If family members aren’t regularly present at appointments, they likely lack critical information needed to comprehend the treatment plan and its rationale. It is completely ok to ask any question you like however probably not ok to do so in an antagonistic or condescending tone. To me, it is completely ok to be on the phone if family members cannot be present. Another option is to record the interaction if approved by the treating oncologist. Nurses or navigators can also be available to discuss the treatment plan if properly documented. Alternatively, electronic medical records has allowed easy accessibility to the patient’s chart including physician notes which may likely detail the overall impression and plan. Finally, 2nd opinions are always encouraged.
Blaming the oncologist for disease progression:
Cancer is a complex disease, and its course can be unpredictable despite the best treatments and efforts. It’s unfair and unhelpful to blame your oncologist for these uncontrollable aspects. We always hope and strive for continued remission, stability or complete response. Ultimately, we give the best treatments we have, and time answers these questions. Equally so, if despite our best efforts after multidisciplinary evaluation and exhaustion of all available therapies including clinical trials, will recommend comfort care with home hospice with the honest sincere intention of making sure the patient is well treated and cared for comfortably at home surrounded by family.
Downplaying or ignoring the seriousness of the condition:
If your loved one has been diagnosed with cancer, it is crucial to face the reality of the situation and participate actively in discussions about their care. I remember a young healthy female patient who unfortunately was diagnosed with an aggressive sarcoma. However, she and her parents declined standard of care curative-intent surgical resection, radiation and systemic therapy. Instead they opted for prayers alone in the church. Despite several attempts pleading with them and even requesting them to seek another opinion or treatment at other institutions, they declined therapy only to return 6 months later wasting away in a wheelchair with widespread metastatic disease.
Assuming you know better based on online research:
While it’s good to be informed, remember that your oncologist has years of specialized training and experience. Your Google search cannot replace experience and expertise. That said, I prefer the family and friends do all the reading and searching online. There are plenty of great sites to review and help patients and family understand their diagnosis, stage, treatments, prognosis. Many patients can handle that as well, but those who are overly anxious are best served to focus on what they can control… their nutrition, physical activity, and mindset. Just keep in mind that every patient and cancer diagnosis are different.
Insisting on futile treatments:
It’s tough to accept when a loved one is at the end of their treatment options, but insisting on aggressive therapies that may cause harm and discomfort is not in their best interest. Just the other day, I saw a patient who was on active therapy at another institution and was transferring her care to resume therapy locally. If the scans were good and she was maintaining a reasonable quality of life, no problem. Unfortunately, when I saw her again with the new scans, she had demonstrated significant progression of disease. Not what I want to see but at least she had 3-4 other reasonable treatment options to consider if she was otherwise doing reasonably ok from a physical standpoint. The problem however was when I went to see her in clinic. She was losing a lot of weight, not eating much with significant loss of muscle mass. More chair-bound most days with profound fatigue barely able to maintain her normal activities of daily living. The window of opportunity to treat her disease had unfortunately closed. More intense chemotherapy would only cause harm and shorten survival.
Refusing to accept palliative or hospice care:
These care options are not about giving up but about ensuring the highest quality of life possible during the time that remains. In addition, it is the patient’s loved ones that also need this support at the home. Again, 2nd opinions are always encouraged if the patient and family feel differently.
Threatening your oncologist:
Thankfully this is rare but traumatic for providers to experience. Threats and intimidation are never acceptable, regardless of the circumstances or the stress you might be under. They only serve to strain the patient-doctor relationship and hamper communication. This can lead to signing a behavioral contract with the institution, transfer to different provider at the same institution, or perhaps a written notice from the practice that you will need to find another provider.
As an oncologist, I continuously strive to navigate this emotionally charged terrain with openness, patience, and empathy, ensuring that the medical journey is a shared one. Today, my practice has evolved to prioritize family inclusion in the care of my patients. I actively encourage patients to bring their loved ones to clinic visits, emphasizing the importance of understanding their diagnosis, treatment, prognosis, and potential clinical course. This allows for a transparent dialogue, and the opportunity to address any questions or concerns in real-time, reducing the chance of misunderstanding, misperception and contention down the line. This article aims to provide a guide to patients and caregivers, highlighting what to avoid when conversing with their oncologist, in order to maintain a supportive and productive dialogue throughout their cancer journey. Remember, your oncologist is your ally in this journey, and open, respectful communication is key to navigating it successfully together.
About the author
Dr. Sajeve Thomas is a distinguished medical professional and a compassionate guide in the field of oncology. With over a decade of dedicated experience as a board-certified medical oncologist/internal medicine specialist, Dr. Thomas has become a trusted expert in the treatment of melanoma, sarcoma, and gastrointestinal conditions. Currently practicing at the renowned Orlando Health Cancer Institute, he brings a wealth of expertise to the complex and challenging world of oncology.