How Long Have I Got?

This is probably the first thing that a patient asks when told they have cancer, but most receive no clear answer to this. They aren’t even told if it is curable or likely to end their life. Sometimes the doctors seem to avoid the issue that they feel the patients don’t want to hear, and the patient is kept in the dark. This article written by Liz Szabo of the Kaiser Health News has posted documented information on this subject.

Dr. Rab Razzak, director of outpatient palliative medicine at Johns Hopkins Medicine in Baltimore believes there are a huge number of these patients that lack even the basic information. Without having this vital information, patients cannot make an informed decision concerning their treatment or how they wish to spend the remaining time they have left. Some of these patients are in denial believing they will live much longer than in reality.

A study was published last year in the Journal of Clinical Oncology that related only 5% of cancer patients with less than 6 months to live had an accurate understanding of their illness and life expectancy. Most can’t ever remember talking to their doctor about life expectancy. The 2012 study in The New England Journal of Medicine reported 69% of patients with metastatic lung cancer and 81% of those with advanced colorectal cancer actually believed that they could be cured, according to co-author Dr. Nancy Keating, professor of health care policy and medicine at Harvard Medical School.

This sometimes leads the patients and their caregivers to choose overly aggressive therapy that can cause unwarranted pain and suffering. In fact, 1/3 of these patients end up in the intensive care unit or ICU. It doesn’t help by lengthening or improving the lives of those with terminal cancer. This can leave families with extended grief and trauma. About half of Americans use hospice care that focuses on comfort care for the remaining part of their life, most only a week before death.

New treatments have caused discussions about prognosis too complicated to talk with the patients about. The doctors are now being required to rethink how they talk to their patients. They do often, when in doubt, lead patients to err on the side of optimism, assuming that treatment will work. Even those doctors wanting to be honest are often unable to forecast how long a patient will live. Only 20% of hospice doctors accurately predicted how long patients would survive in a study of 468 terminally ill cancer patients. Of course, some patients believe that statistics aren’t going to help and they just need to trust the people who have so far treated them.

Clinical visits show that less than 10% of an oncologist’s time is devoted to talking about the patients’ prognosis, according to a study in the Journal of Oncology Practice. The overuse of medical terms that patients do not understand is also given to   them that can also give them false hope. This false hope can cause other medical conditions for the patient that could cause their end of life sooner.

Surveys show that doctors want to be honest with them, but at what price for the doctor? Those delivering optimistic messages are usually rated as more compassionate and trustworthy, but patients need accurate information for their prognosis. Sometimes what doctors say and what the patients hear are very different things. They often struggle to provide accurate information without scaring the patients away.  If a doctor is too negative, patients will sometimes see another doctor who will tell them what they want to hear.

If a patient would keep notes to provide a written summary about what he/she feels is the next step in the treatment or concerns, the patient and doctor could stay on the same page. Some patients need to know everything about their cancer while others are too overwhelmed with knowing it all. Keeping notes to ask your doctor about specifics can help the patient understand all the clinical jargon. Most patients need to know about their goals and values in order to avoid unwanted medical interventions.  A 2015 study shows that patients who had end-of-life discussions were half as likely to end up in the ICU before dying, compared to those who didn’t have these conversations. The American Society of Clinical Oncology recommends everyone with advanced cancer receive palliative care within 8 weeks of diagnosis to help patients live longer and better.

Most patients have loose ends of their lives to tie up and need time in which to do this.  If I were in this situation, I would definitely rather have the accurate prognosis at the beginning so that I could secure my family and take care of the details. Given false hope would not help me pass on in peace if I had not had time to take care of my personal concerns and loved ones.

Dr Fredda Branyon