It is challenging to break the news that someone has cancer. The three key players in this process are the patient, the doctor, and the patient’s family. This article discusses the critical aspects that the family, as well as the doctor, should consider during the process of disclosing a diagnosis of cancer.
A diagnosis of cancer is a life-changing event for the patient and their loved ones. The way in which the initial diagnosis is revealed is crucial in determining the way the patient copes with the illness, participates in decision-making, and handles the treatment.
Here are the important aspects to keep in mind while revealing a diagnosis of cancer.
- Patient autonomy and family wishes: In most western countries, it is legally binding for the physician to disclose a serious illness primarily to the patient, and this information can only be shared with the family if the patient authorizes it.1,2 However studies3,4,5 show that family members in Asian countries are more involved during the discussion – this is true in my practice in Bangalore, India as well. In fact, it is common for the family to be aware of the diagnosis before the patient themselves. Also, the family members often ask the doctor to withhold the diagnosis from the patient citing fears like “the patient may not be able to bear it”, or “revealing the diagnosis of cancer could itself cause a deterioration in the patient’s condition.”
Research clearly shows that disclosure of a diagnosis does not cause mental harm6,7,8. In my personal experience, patients who are aware of their diagnosis cope better. On the contrary, trying to hide information is often counterproductive.9 It is almost impossible to keep the patient completely in the dark about their diagnosis. The uncertainty of knowing that they have a serious illness, but not being aware of the whole picture often makes people imagine that things are worse than they actually are. I have had innumerable patients express relief after their diagnosis and prognosis were clearly explained.
- Truthfulness: Apart from being morally and ethically right, it is also wiser to be truthful. Especially when someone asks direct questions (“Do I have cancer?”, “What stage is it in”), it usually means they want to know what is going on. Outright lying (saying “you do not have cancer”, or “you will live to be a hundred” to someone in a terminal stage of cancer) is a disservice. People can usually see through these lies, and may stop believing even positive information from the same source.
- Amount of information and understanding: While truthfulness is essential, the other extreme is overwhelming the patient with information they may not want to hear. The question is not “whether the patient wants to know” but rather “how much they want to know”. This is where the conversation should use the “invitation approach”,10 to disclose information in a step-by-step manner. Here, in response to an initial question by the patient, a brief but clear answer is given. The answer is framed in an open-ended way which prompts another question, and if the patient chooses to ask a subsequent question then the conversation continues.
It is especially important to make sure that the patient understands not only the facts, but also the meaning of these facts, and this should be clearly conveyed without using medical jargon. It makes no sense to someone to hear that they have stage IIIB proximal rectal adenocarcinoma and that they require neoadjuvant chemoradiation followed by low anterior resection surgery, probably via a laparoscopic approach.
- Time and place: The sanctity of the cancer disclosure process must be respected. It is the duty of all concerned to take pains to put the patient at ease as much as possible. An ample amount of time should be spent without any interruptions. The place chosen should be quiet and comfortable with adequate space for close family members to be present if required.
- Empathy: A doctor-patient-family relationship is built on empathy. It is not sufficient to provide information and end the discussion. People need to express their feelings and concerns, and the doctor, as well as the family, must listen and be responsive and encouraging. It should be clear that the patient is at the center of everybody’s efforts, and that everybody is working together towards the best possible outcome.
To summarize, the initial disclosure of the diagnosis is a difficult but crucial aspect of the care of a person with cancer, and must be handled with thoughtfulness and care.
- Entwistle, V. A., Carter, S. M., Cribb, A., & McCaffery, K. (2010). Supporting patient autonomy: the importance of clinician-patient relationships. Journal of general internal medicine, 25(7), 741–745. https://doi.org/10.1007/s11606-010-1292-2
- Feldman M.D. From the editors’ desk: Patient autonomy and medical decisions: Getting it just right. J. Gen. Intern. Med. 2010;25:639. doi: 10.1007/s11606-010-1391-0.https://rdcu.be/cmQIc
- Holland, J. C., Geary, N., Marchini, A., & Tross, S. (1987). An international survey of physician attitudes and practice in regard to revealing the diagnosis of cancer. Cancer investigation, 5(2), 151–154. https://doi.org/10.3109/07357908709018468
- Surbone A. (1992). Truth telling to the patient. JAMA, 268(13), 1661–1662.
- Thomsen, O. O., Wulff, H. R., Martin, A., & Singer, P. A. (1993). What do gastroenterologists in Europe tell cancer patients?. Lancet (London, England), 341(8843), 473–476. https://doi.org/10.1016/0140-6736(93)90218-6
- Tattersall, M. H., Gattellari, M., Voigt, K., & Butow, P. N. (2002). When the treatment goal is not cure: are patients informed adequately?. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 10(4), 314–321. https://doi.org/10.1007/s005200100291
- Horikawa, N., Yamazaki, T., Sagawa, M., & Nagata, T. (1999). The disclosure of information to cancer patients and its relationship to their mental state in a consultation-liaison psychiatry setting in Japan. General hospital psychiatry, 21(5), 368–373. https://doi.org/10.1016
- Hosaka, T., Awazu, H., Fukunishi, I., Okuyama, T., & Wogan, J. (1999). Disclosure of true diagnosis in Japanese cancer patients. General hospital psychiatry, 21(3), 209–213. https://doi.org/10.1016/s0163-8343(98)00075-9
- Hitoshi Okamura, Yosuke Uchitomi, Mitsuru Sasako, Kenji Eguchi, Tadao Kakizoe, Guidelines for Telling the Truth to Cancer Patients, Japanese Journal of Clinical Oncology, Volume 28, Issue 1, January 1998, Pages 1–4, https://doi.org/10.1093/jjco/28.1.1
- Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & Kudelka, A. P. (2000). SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. The oncologist, 5(4), 302–311. https://doi.org/10.1634/theoncologist.5-4-302