Surveys consistently show that the majority of people with advanced illness want to know how long they have to live.¹ However, only 43% of oncologists report usually having conversations about life expectancy with patients.² Why are these two trends in conflict? Why do most doctors do the opposite of what most patients want? More importantly, what can you do to ensure care is managed according to your values?

What is Prognosis?

First, we should start by defining and understanding an important term: prognosis. A prognosis is a prediction about the likely course of a disease. More specifically, in end-of-life care, the term “prognosis” usually means how long a patient has to live. A prognosis is an educated guess. Medical science can only estimate length of life based on how a particular disease has affected many people in the past. Individual responses can be different, and ever-improving medical care constantly changes the answer. Nonetheless, doctors can, with some accuracy, tell patients if they are likely to live years, months, weeks, or days. Then why don’t they?

Do Patients Want to Know How Long They Have to Live?

Across multiple surveys spanning several years, the answer is consistent. Most patients want to know how long they have to live. In a study published recently in the Journal of Clinical Oncology, Andrea Enzinger and colleagues found that 71% of patients with cancer wanted to know.³ Of course, that means more than a quarter of patients don’t want to know. The answer for doctors seems simple: “ask.” Doctors could ask patients, “Would you want to be informed if your prognosis is ever one year, six months, three months, or one month?”

Why Doctors Don’t Tell Patients How Long They Have to Live

Of course, surveys show that doctors don’t ask patients about their prognostic disclosure preferences. Only a minority of doctors say they “usually” have this sort of conversation. When doctors are asked why they might be hesitant to discuss prognosis with patients, these answers emerge:

• Uncertainty around prognosis:⁴ Cancer is a more predictable disease. Many other types of terminal diseases have a variable, less predictable course. This is especially true with organ-failure diseases. When doctors are uncertain about their prognoses, this makes them less willing to bring up the subject with patients.
• Uncertainty around patient preferences:⁵ Doctors report not even bringing up the subject of prognosis until after patients make their wishes clear.
• Unwillingness to damage a patient’s emotional wellbeing:⁶ Many doctors fear revealing a prognosis could rob a patient of hope or push that patient toward depression.
• Fear of compromising the doctor-patient relationship:⁷ Doctors know that if they mishandle a conversation about prognosis, patients may perceive them as being uncaring or inappropriate.

Prognostic Disclosure Does Not Harm Patients

Research suggests that most of these excuses for withholding prognosis are not only wrong, but harmful.³ Andrea Enzinger and her research team followed 590 patients with advanced cancer. Patients came from eight different treatment centers across the country. On average, each patient lived five months after being enrolled in the study. These patients did not get the information they wanted. While 71% of patients in the study said they wanted to know their prognosis, only 17.6% reported having that conversation with a clinician. Most patients who wanted to receive their prognosis did not. Among patients who wanted to be told their life expectancy, 67% reported that this had not happened.

Researchers asked patients about their relationships with their doctors. The presence or absence of a prognostic conversation did not affect those relationships positively or negatively. In other words, the fear doctors expressed about damaging the doctor-patient relationship did not bear out in research. Furthermore, patients who had been told their life expectancies did not show more signs of worry, anxiety, or depression.

Prognostic Disclosure Helps Patients and Families

Contrary to the concerns expressed by doctors, prognostic disclosure improves wellbeing for patients and families. Patients who have this conversation with a clinician prove less likely to grossly over-estimate how long they have to live. They prove more likely to engage in advance care planning such as living wills and power of attorney decisions.³

Moreover, a study published in the Journal of the American Medical Association finds that patients who know their prognosis have higher quality of life.⁶ Their families also have better emotional status after the patient dies. The patients and their families prove more likely to make care decisions that serve them and their families well. In particular, they proved more likely to enroll in hospice in a timely fashion. Hospice is connected with longer life for people with advanced illness, higher quality of life, and better emotional outcomes for the family.

How Patients and Families Should Learn About Prognosis

Patients and families can protect themselves by understanding the issues surrounding prognostic disclosure and by having frank conversations with the doctor. Patients should always ask doctors if a new diagnosis could be fatal or could shorten life. Patients should let doctors know if and when they want to know their prognosis. It’s okay for a person to decide that it’s not information he or she wants to deal with. This is an individual decision. In this case, the family, doctors, and nurses should be informed proactively that the prognosis should not be blurted out without explicit permission. However, the majority of people want life expectancy information and will use that information advantageously in their care planning. The majority of people should tell doctors when and if they want to know their prognosis and should ask for their prognosis periodically.

References:

1. Enzinger A, Zhang B, Schrag D, Prigerson H. Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol. 2015; doi. 10.1200/JCO.2015.61.9239.
2. Daugherty C, Hubocky F. What are terminally ill cancer patients told about their expected deaths? A study of cancer physicians’ self-reports of prognosis disclosure. J Clin Oncol. 2008; 26: 5988-5993.
3. Enzinger, Andrea C., et al. Outcomes of prognostic disclosure: Associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. Journal of Clinical Oncology. 2015; 33 (32): 3809-3816.
4. Selby D, Chakraborty A, Lilien T, et al. Clinician accuracy when estimating survival duration: the role of the patient’s performance status and time-based prognostic categories. J Pain Symptom Manage. 2011; 42: 578-588.
5. Keating N, Landrum M, Rogers S, et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010; 116: 998-1006.
6. Wright A, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008; 300 (14): 1665-73.
7. Gordon E, Daugherty C. Hitting you over the head: Oncologists disclosure of prognosis to advanced cancer patients. Bioethics. 2003; 17: 142-168.