Everyone has a story. Colin’s story is not just about his journey through a cancer diagnosis and ultimately, his death. Patients succumb to the brutal effects of cancer every day, and families are left in the aftermath to pick up the pieces. However, Colin, and thousands of cancer patients like him, go to their deaths without ever being told they are dying. Unfortunately, Colin lost his life without ever having the chance to say goodbye to those that he loved. He did not have a peaceful end where he felt reassured and comforted by those taking care of him, or have the opportunity to achieve some of those things that might have been his priorities in the last few weeks of life. This is Colin’s story, and one that I hope will encourage patients to communicate with their physicians about their prognosis before it is too late.
In a study published in The Journal of Clinical Oncology, “What Are Terminally Ill Patients Told about Their Expected Death,” the results show that 48% of all oncologists do not routinely tell their patients that they are dying, and when they do tell them, it is only because patients have initiated the conversation. Patients who did not inquire about their prognosis were not given the information. Furthermore, most oncologists agree that once an aggressive form of cancer returns, they can use their clinical experience and judgement to estimate how much time the patient has left with some accuracy. It is no longer a consideration of whether or not the patient will survive. It becomes an estimation of how much time the patient has left. While there will continue to be those patients who defy the odds, the vast majority will not when it it comes to battling an aggressive form of cancer.
Is the decision not to tell the patient the truth really the best choice for all terminally ill patients? There is evidence to support both sides of the issue. Oncologists report that prognostic information is not withheld from patients to be unkind, but to give them hope, thereby strengthening their will to live, and ideally, to keep them living longer. Doctors want the best for their patients. It goes against the grain of their medical training to say, “I can’t help you.” Physicians may also believe that they are sparing their patients the pain and sorrow of knowing that they are going to die. However, where does that leave patients who want to know the truth about their prognosis, but are not aware that they have to ask in order to get the information?
Colin’s story was heartbreaking for him and for those that loved him. However, with 48% of oncologists electing not to tell their patients about their prognosis unless they initiate the conversation, it is a story that has undoubtedly been repeated in hospitals across the country. Colin lost his life without ever having the chance to realize any of the major milestones to which we all look forward. He was unaware that his time was limited at age twenty-eight when he died from end stage metastatic melanoma. There was no time to say goodbye to the woman that he loved, and no time to spend with family or friends. In addition, it was important to Colin that Holly, his fiancé, inherit his company and his assets in the event of his death, but he died before they could marry. Receiving his prognosis in a timely manner would have allowed him to arrange for those things that were important to him. There would have been time for a proper engagement, for a wedding, and for a honeymoon. One of the family’s deepest regrets was that during the last few months of Colin’s life, he was alone while his fiancé and other family members attended to the normal routines of daily life. Had they known the truth, Colin’s fiancé would have taken a leave of absence, and they could have at least shared the beginning of their lives together. Family could have visited and helped with caretaking responsibilities as much as the young couple would allow. Unable to realize the dreams that were within reach was tragic for Colin and his fiancé, and it is the same for the countless thousands of other patients who die every day without being able to say goodbye to their loved ones because they have not been informed of the severity of their illness.
Although it is true that some patients do not want to know their prognosis, the vast majority of them do. What can be done to identify those patients who want to know their prognosis and those who do not? Patients need to take an active role and ask their physicians about their prognosis before it becomes an issue. Physicians need to reevaluate if they are meeting the needs of all their patients if they only disclose prognostic information when asked. No one should write the end-of-life story for another human being without their express permission to do so. It is the patient’s information, and it is the patient’s life that is ending. The patient should have the final say on whether or not they want to know their prognosis, when they want to know it, and how they want to receive it. Physicians should honor their patients’ wishes even though they may find it difficult to do so.
It is time that patients and their physicians start communicating with each other in a more direct and meaningful way. We should strive to identify the barriers to patient-provider communication in order to adequately evaluate the absence of this kind of dialogue between physicians and their patients. Hopefully, we can come up with something better than what currently exists. Patients may not be able to provide all of the solutions, but if we raise our voices loud enough, someone, with the authority to do so, may be inspired to initiate change.
Daugherty CK, Hlubocky FJ. What Are Terminally Ill Cancer Patients Told About Their Expected Deaths? A Study of Cancer Physicians’ Self-Reports of Prognosis Disclosure. Journal of Clinical Oncology. 2008:26(36):5988-5993. doi:10.1200/JCO.2008.1722
Hagerty RG, Ellis PM, Lobb EA, PendleburySC, Leight N, MacLeod C, Tattersall MH. Communicating With Realism and Hope: Incurable Cancer Patients’ Views on the Disclosure of Prognosis. Journal of Clinical Oncology. 2005 Feb 20;23(6):1278-88.