The often-asked question for many of my patients and their families toward the end of life goes something like this: “Okay, Doc, how long do I have?” This is an emotionally charged issue that I handle with tact and diplomacy even though the answer is complicated.
If you watch many daytime soap operas and TV medical shows, the doctors always give the patient “six months,” which is why my patients and families often expect a prediction.
For most conditions, such as heart disease, kidney failure, and cancer, there are some reasonably predictable observations and tests and scans that help predict how long a patient may live. But these are rarely precise and really cannot help us give a specific answer because each patient is different, and many factors affect survival.
We have often heard about the experience of a patient just hanging on until the estranged daughter shows up, and then the patient is at peace and dies. I’ve seen this over and over in clinical settings. But let me get more specific.
It is vitally important that patients and families have some understanding of prognosis—the expected outcome or forecast about the condition.
When patients have an unreasonably optimistic estimate of survival, they generally favor more aggressive, potentially dangerous, and invasive interventions, some studies show. For example, I am reminded of a gentleman in his early forties who had a heart infection that developed into a condition called cardiomyopathy. This simply meant that the pumping chambers of the heart became weakened, and the patient was short of breath and had swelling of the legs and was miserable.
Yet he had an unrealistic estimate of his survival and was willing to undergo all sorts of experimental drug treatments to bolster the pumping of the heart. He did not do well, and his remaining time was not quality filled.
On the other hand, his family shared with his healthcare team that if he had known how grave the prognosis was and how limited his survival time, he would not have been willing to undergo these incredibly painful and unsuccessful interventions.
A technique that I have found helpful is to reframe prognosis in terms of events, holidays, and celebrations. For example, if the patient had a prognosis of six months in January and he was an avid fisherman, I might say that by the time the fishing opener came around—mid-May in Minnesota—we should be prepared for some major setbacks.
This technique works with families who, instead of counting days and weeks and months, have an undefined target, such as “holiday time” or “fall” or “when the weather starts to warm up.” When a patient and family put the prognosis into perspective this way, plans can be made without pressure and presumption.
Another dimension of the prognosis discussion is for us on the medical side to simply ask the patient this: Why is this question important to you at this time in your illness? The person’s response can offer a rich dialogue of unspoken concerns that need to be addressed and reconciled as their physical condition deteriorates.
It’s reasonable for patients and family to question the healthcare team about length of survival to make time to close doors, open new doors, forgive and be forgiven. But rather than asking for a specific number, which can be misleadingly unrealistic, simply ask whether or not the patient might be here for the holiday season or for Mother’s Day or the next Super Bowl. This gives patients and families a target—a span of time during which to do the important work of healing the wounds of the soul.
Edward T. Creagan, MD, a cancer specialist, is the first Mayo Clinic doctor board certified in hospice and palliative medicine. His new book, Farewell: Vital End-of-Life Questions and Candid Answers, is about navigating those precious last days, at the bedside, and saying farewell with hope, love, and compassion.