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Doc, How Much Time Do I Have?

From the Division of Medical Oncology, Mayo Clinic, Rochester, MN.

Address reprint requests to Charles L. Loprinzi, MD, Division of Medical Oncology, Mayo Clinic, 200 First St SW, Rochester, MN 55905; email cloprinzi{at}mayo.edu

THE PATIENT AND HER SITUATION

MARY SMITH IS 42 years old, married, and the mother of three children under 12 years of age. Previously healthy all of her life, she presents with a 2-week history of stomach upset, anorexia, and abdominal discomfort. On evaluation, she has an enlarged liver, moderate jaundice, and deteriorating liver functions. A computed tomography scan followed by a needle biopsy reveals pancreatic carcinoma with liver metastases. She receives standard chemotherapy but returns 6 weeks later with evidence of disease progression and increasing pain and weight loss.

Mrs Smith’s case is discussed with medical oncology colleagues who agree that no further chemotherapy is indicated. These colleagues all believe that the median survival time in this case is predictably 1 month, with only 10% of people expected to survive for more than 4 months.

The patient agrees with her physician about ending chemotherapy and entering a hospice program. But she has one more question.

THE ROLE-PLAY

Two people took their places on a set constructed to resemble a physician’s office. One person was a physician with at least 10 years’ clinical experience in oncology. The other was an actress playing the role of Mary Smith. The scenario was repeated with different physicians addressing Mary’s question.

Each time, the actor/patient set a somber mood and, with hesitation in her voice, said, "I have one more question ... ... How much time do I have?"

THE RESPONSES

Physician 1
That’s a difficult question and one that we as physicians talk about quite frequently. We try to look for ways to answer such a difficult question. How do we portray the best mix of hope and reality for which you are asking?

I can tell you some doctors will say that they don’t know how long you have left. They say that statistics are only numbers and might be accurate only for some people. I don’t think that’s fair. You’re asking such a difficult question. I think I have to be forthright and answer your question better than that. I assume you are asking this question so you can have an idea of how to prepare for what is ahead.

Let me again reiterate that I don’t know how long you, or any person, has left. I can only make an educated guess. Generally people in your situation have time that is measured in weeks, not months or years. That doesn’t mean you’re not going to be here in 2 or 3 months but many ... most ... people in your situation won’t be here in 2 to 3 months.

What are you to do with this information? We all have to plan for the worst. Things that need to be signed and things that need to be said, should be.

And yet, hoping for the best is realistic. I encourage you to live each day as fully as possible. Do the things you want to do and try to let this disease interfere in your life as little as possible. We know that, eventually, it will interfere with your life in a major way in the time to come.

I believe your decision to go along with the hospice program is one that will allow you to do as well as possible for as long as possible. May I answer any questions?

Physician 2
The problem with giving specific amounts of time is that I don’t have a crystal ball. Certainly you have a very serious problem and the outlook is not good. I’ve seen patients whom I thought would not do so well, and I have been surprised. And I have seen others whom I have actually discouraged from rescheduling a child’s wedding, only to learn they have passed away in 6 weeks. So, I am often wrong, and that’s the problem with giving specific times.

You have had chemotherapy and it hasn’t worked. We’re not going to be actively treating you for your cancer now, so your time may be short. If you have not taken care of your affairs, for example, financial affairs, you need to do so while you are still able.

Physician 3
I wish we had a simple answer to that question, Mary. I think it’s fair to acknowledge that none of us is a prophet and none of us can say that you, or anyone else, will live a certain amount of time. You have three young children and a husband. You have lots of assets and issues that need to be addressed. So I need to give you a framework of time as best I can. If there were a hundred people in your situation, most of those people would have major problems within 1 month or so.

Now, please understand that some people do better than others. But to give you a framework, let’s consider that we are now at Labor Day. By the time we get into late September, early October, I would expect that you would be having major challenges or problems.

Physician 4
That is such a natural question and my predictions are not perfect. Sometimes statistics can hurt people. People sometimes leave this room feeling branded with a number. We know that your disease is a faster-growing cancer. It can allow you to feel all right for a time and then will escalate. If we look back at how you were feeling 2 months ago and how you are feeling today, I think you can get a sense of the progression of the cancer. If we say where we will be in another 2 months, it is possible that it will take your life that quickly. It could be sooner. It could be later than that.

What thought have you been giving to your death and what you want?

Physician 5
That’s a good question and one that is hard to answer. Nobody predicts the future. But yours is a very serious situation and we have agreed not to intervene any further with treatment. Have any other doctors or members of the nursing staff told you anything?

Patient: Oh, my friends mostly all tell me they know someone with this cancer who is alive years later. They want to make me feel better. But I know what they are saying doesn’t really apply to me. I know that.

Physician: Well, you are right. Most people with this disease will have problems soon. If you have concerns you need to address from a personal or legal standpoint, I think it is time to do those things now while you still can. Time could be very short—a few weeks to a few months. I think it is advisable to prepare for the worst and hope for the best.

Physician 6
That’s not an easy question, as you might imagine. We aren’t very good at predicting, but I think it is fair to try to give you some sense of where I think the disease is going. If the disease continues in the same pattern, you will probably have the time you need to organize things for your family and any other personal priorities that you want to address.

It is clear that your cancer is acting aggressively and that, if we continue in this fashion, time may be as short as a few weeks to a few months. I know that time frame is very short for someone who was so recently diagnosed. I think our hospice team could be of help to you in prioritizing how you want to spend your time and energy as well as helping your family with their adjustments.

Physician 7
I think you ask a very reasonable question for the situation you are in. And it is a hard one to answer. Certainly it sounds like the disease is really threatening your life. But I am not God and I cannot predict the future.

What I do know is that the cancer is resistant to the chemotherapy and you’ve developed jaundice. This tells me that your liver isn’t working very well. Time is really getting short. I think the disease will likely take your life over the next 2 to 3 months.

SOME THOUGHTS

A number of unifying themes ran throughout the unique answers that were provided to Mrs Smith’s question: "How much time do I have left?"

Disclaimer Regarding Uncertainty
"How much time do I have?" is a powerful question, one that evokes vulnerability in the caregiver. Each physician in this scenario began with a disclaimer coupled with an acknowledgment of powerlessness. This is a crucial moment in the patient-physician relationship. The physician, usually able to call upon depths of scientific and clinical wisdom and skill, now must acknowledge his/her inability to change the ultimate outcome.

However, while the physician is powerless to heal, he/she is not without knowledge. Why did these physicians seem reluctant to impart the objective facts about survival times in this situation, ie, 1 month or so on average, with only 10% of patients surviving 4 months?

Perhaps our reluctance to boldly state such information, without cushioning it, is rooted in our desire to avoid doing harm. Such stark and life-changing information needs to be shared sensitively if it is to deepen, rather than injure, trust between patient and physician.

General Time Frame
With one exception, everyone provided a general time frame, but no physician provided specific numbers despite knowing the median survival rate for this patient. The doctors tended to present the positive end of the spectrum, ie, months as opposed to weeks. Whether their answers reflect a reluctance to predict an unpredictable future, an unwillingness to remove hope from a dying patient, or a desire to do no harm, physicians were deliberately vague. Is it best not to be very specific? Is it best to err on the positive side? Are the respondents afraid they will diminish hope? Are they afraid the patient will be too upset?

Predicting and conveying prognosis has been broken down into two separate domains labeled forecasting and foretelling.¹ It has been suggested that physicians tend to err on the positive side for each of these components, which results in foretelling that is often more optimistic than actual outcomes. This exercise described here, which addresses the foretelling component, not the forecasting component, does support this phenomenon. It seems reasonable to suspect that even more positive outcomes (than reality) would be portrayed in a situation in which prognosis is not as evident as it is in this case (eg, newly diagnosed incurable lung cancer).

Hope as a Dynamic Entity
Hope should not be static. It should be a dynamic entity that is reframed by circumstance, relationships, and the ongoing development of one’s personal world view. Hope should be reframed by the life transitions that occur as a part of loss of health and a certain future. If Mrs Smith’s hope remained based only on cure and mortal survival, it likely would be quickly extinguished by the biologic realities inherent in this scenario.

How can the physician acknowledge and encourage this process of reframing, using it as a strength for the patient? How does Mary Smith move from living her normal life as a farmer, wife, and mother of three small children to preparing for her death? What does she need to know in order to continue her reframing? Where does her hope reside, if not in cure and long-term survival? Her question, "How much time do I have?" may be a clue to the answer. The focus of her hope may now be the discovery of some predictability and, perhaps, the formulation of a plan that would allow her to address her obligations and dreams.

Do Things That Need To Be Done
Knowing how much time one has left provides a measure of control and order in an uncontrollable future. Several of the physicians acknowledged this need for control: "Do the things you need to do and try to let this disease interfere in your life as little as possible"; "the hospice team could be of help to you in prioritizing how you want to spend your time and energy."

The work of dying involves every person’s need to feel satisfied that obligations have been met—mending broken relationships, imparting wisdom, finishing one’s work. The quest for a measure of time may be a request for the opportunity to do this important preparatory work. Several of the physicians acknowledged these obligations. "If you have not taken care of your affairs, you need to do so while you are still able"; "you have lots of assets and issues that need to be addressed."

Providing Reassurance of Continued Support
Physicians should recognize their important role in the patient’s work of dying. They need to provide assurance about pain management, information about what will happen to the body as a result of the progressing disease, and advice about spiritual and emotional support for the patient and family. The question, "How long do I have?" may be overlaying a more significant question, "What is it like to die?" This question can serve as a springboard to explore the patient’s hopes, fears, and expectations about coming to the end of life. The physician’s effort to address emotional and spiritual needs can be complemented by additional resources designed to provide support to the patient and loved ones. These resources may come in the form of a chaplain, pastor, spiritual counselor, or grief therapist. Most importantly, the physician must convey to the patient her/his central and continued involvement with the plan of care. Physical, emotional, and spiritual help will be provided and abandonment will not occur.

Summary
From these close-to-life examples of how experienced oncologists foretell prognostic information in a grim situation, we can glean the following components that should be considered in answering the proposed question.

• Acknowledge uncertainty.

• Foretell a general, realistic time frame.

• Provide realistic hope.

• Recommend "doing the things that should be done."

• Provide realistic assurance that you’ll be available to help the patient through the dying process.

• Refer for emotional and spiritual support in "dying well."

• Ask patients what they want to accomplish.

• Encourage additional questions.

Physicians want to help their patients live, not die. But for those situations where the outcome cannot be prevented by their skills, we trust this piece will serve as a nidus for reflection and discussion as oncologists, and other physicians, address the question, "Doc, how long do I have?"

REFERENCES

1. Lamont EB, Christakis NA: Some elements of prognosis in terminal cancer. Oncology 13:1165-1170, 1999[Medline]

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