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Journal of Clinical Oncology, Vol 18, Issue 13 (July), 2000: 2640-2643
© 2000 American Society for Clinical Oncology


The Art of Oncology: When the Tumor is Not the Target

A Revisitation of "Doc, How Much Time Do I Have?"

By Lidia Schapira, Peter D. Eisenberg, Neil MacDonald, Matthew P. Mumber, Charles Loprinzi

From the Beth Israel Deaconess Medical Center, Harvard Medical School, Brookline, MA; Marin Oncology, Greenbrae, CA; Cancer Ethics Programme, Centre for Bioethics, Clinical Research Institute of Montreal, Montreal, Canada; InterCommunity Cancer Center, Rome, GA; and 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

A PREVIOUS ENTRY IN this section of the Journal of Clinical Oncology was entitled, "Doc, How Much Time Do I Have?"1 This work reiterated and discussed how seven individual oncologists addressed the above query asked by a young woman with an aggressive malignant process. The following commentaries ensued.

LET’S MAKE IT A DIALOGUE

In the article "Doc, How Much Time Do I Have?"1 it is noted that the patient’s voice was not heard. Only one of seven physicians checked in with Mrs Smith before answering the question (Physician 5 asked the patient what she already knew before responding to her question). In reading the responses, they sounded more like lectures than the dialogue one imagines could have ensued with a trained actress simulating a real-life scenario.

A different scenario is offered. Here’s Physician 8:

Mrs Smith: How much time do I have?

Physician: What is your sense, Mrs Smith?

Mrs Smith: I don’t really know. All this has come as such a shock to me. I have been healthy all my life until now (she starts to cry)... sounds like you’ve all given up on me.

Physician: No, we’ve not given up on you. We’ve had to change our goals of treatment because the chemotherapy was not helpful. I hope you don’t interpret that as our having given up on you as a person. In fact, that’s what you and I need to discuss right now—what we can accomplish together without chemotherapy and how you think we can best help you during these difficult times.

Mrs Smith: (crying) Will you still be my doctor? What’s going to happen next?

Physician: Yes, I will remain involved. There will be a team of nurses, social workers, pharmacists, volunteers, and possibly other doctors affiliated with hospice, but I promise you I will continue to be involved in your care. I can’t promise I’ll make house calls, but I promise I’ll call you once a week—we can set up a regular time—and check in with you. I will also be available to the hospice physicians and nurses as a consultant. As for your question, "What’s going to happen next?"... I can tell you that, based on my experience treating this illness, I expect that you will get weaker and continue to lose weight. Your pain may increase and this will require us to work very hard to find the right combination of medications to keep you as comfortable as possible. That may become our new goal, to treat your pain and keep you functioning as much as possible for as long as we can.

Mrs Smith: (now not crying any longer, appears quite calm although very sad) How much time do I have?

Physician: Not much, I’m afraid... . Generally speaking in these situations, not more than a few months. Please understand that I cannot be sure of this time frame, but it is my best and honest guess that we’re looking at very little time, Mrs Smith.

(There is a moment of silence shared by both physician and patient.)

Mrs Smith: What happens now?

Physician: I’d recommend devoting your energies to completing things you think are most important. If there are legal or financial issues you need to address, do it as soon as you can so you are free to concentrate on emotional and spiritual matters. Think of each day as precious and help us make you comfortable so you can enjoy the company of your loved ones. I would advise you to talk with a social worker or counselor so you may help prepare your children. They will remember these times very vividly for as long as they live... (pause) What is on your mind now, what do you want to accomplish?

Mrs Smith: My goals have changed... and are changing right now as I hear your words. You have been kind to me and I thank you for that. I am just overwhelmed by the situation and feel I have to be strong for the sake of the kids.

Physician: Does your husband know how sick you are? Do you have any other relatives in the area who may be able to help?

Mrs Smith: Yes, I have just kept them all at a distance... I guess that game’s over now. Doctor, will you do me one last favor? Will you talk to my husband and tell him what you’ve told me?

Physician: Of course, Mrs Smith. I think we’ve covered a lot of ground today. Think about things; let’s talk on the phone tomorrow. I’ll make the referral to home hospice after I talk with your husband. Do you need a prescription for pain medications?

Reading the physician’s lines in the above dialogue demonstrates many similarities to those uttered by the physician respondents and incorporate all of the components suggested in the summary of the article.1 The difference is that there was a dialogue that gave the patient an opportunity to express emotion and articulate her concerns and fears. The physician’s flexibility and presence allowed her to start working through some of these very complicated matters that constitute death’s preparatory work. Physician 8 made it clear that he/she was not going to abandon the patient, provided realistic hope, and helped the patient focus on the opportunities for closure that she needs to pursue in the very near future. His/her willingness to share her emotional pain for a few minutes was rewarded by the patient’s expression of thanks.

When we reflect on our day’s work and ask ourselves what it is that we can offer when treatments fail and death is imminent, it is fair to say that patients need us to acknowledge their losses and accompany them, even for a short moment, as they face the sadness inherent in their situations.

Lidia Schapira, MD

WHAT DOES THE PATIENT KNOW?

The article "Doc, How Much Time Do I Have?"1 does infinitely more for the good practice of medical oncology than any bundle of phase II study results. These end-of-life issues certainly are difficult but also are enormously important to patients and their families.

The response of Physician 1 is particularly fitting. It seems appropriate to talk about "time measured in days, weeks, months, or years."

Illness is a process that inconveniences patients and robs their freedom over time. It should be explained to patients that, as their disease grows, they might find that they may no longer be able to do the things they used to be able to do. They can be reassured that this may happen slowly and, sometimes, even imperceptibly. Oftentimes, the ability of patients to understand what is gong to happen to them does reassure them, even if what is going to happen is really bad.

As pointed out in this article, it is important to ask patients how they understand their illness. It is often easier to start answering difficult questions when the oncologist knows the patient’s understanding of their disease (whether it be a correct, or incorrect, understanding of such). This may better allow the physician and patient an opportunity for reframing—that is, a readjustment of expectations.

Patients seem to understand very well when chemotherapy stops working for their disease. In terrible-to-treat diseases, where no good second- or third-line therapy exists, patients should be told that we could treat them with a new medication with a small chance of success or that we could change our goals. Rather than hoping to shrink the tumor, which is not always accompanied by prolonged survival, we might consider reducing and/or preventing symptoms. In general, people seem to understand this change in goals and, as long as there is "something to fight for," they are oftentimes acceptant.

Peter D. Eisenberg, MD

PALLIATIVE CARE IS "ACTIVE" CARE

This thoughtful essay, "Doc, How Much Time Do I Have?"1 opens up a number of themes for further discussion. First, it raises an issue about the use of open questions to encourage dialogue. Only two of the seven physicians asked questions encouraging open dialogue that touched on, perhaps, unspoken patient concerns and psychosocial issues. Physician 1, after a long discourse, concluded with a less than helpful invitation for conversation, a perfunctory statement, "May I answer any questions?" Mary Smith’s physician may be certain that she will have many unexpressed fears and concerns. Patients may benefit from invitations encouraging their participation in the discussion, such as "I expect that you may have concerns about your family and how we should work together to inform them in the most helpful way. Would you like us to talk about this?"

Second, a tenet of palliative care holds that the unit of care is the family. Mrs Smith’s query, "How much time do I have?" is no doubt generated in good part by her concerns for her three young children and husband. She will probably welcome physician commentary demonstrating that her doctor fully understands the breadth of her concerns.

Third, the dialogue of some of the physicians demonstrates a curious irony that has permeated medical oncologic practice throughout its history. Physician 2 says, "We’re not going to be actively treating you for your cancer now... ", whereas Physician 5 says, "We have agreed not to intervene any further with treatment."

Mrs Smith had previously received gemcitabine, which has a trivial objective response rate, a modest demonstration of life prolongation for pancreatic cancer patients, and a slightly better pedigree for symptom improvement. What was the nature of the discussion with Mary Smith at the onset of the chemotherapy trial? Did both patient and physician share a false understanding of the benefits and outcome of chemotherapeutic treatment? Did they not at that time have a discussion of "How much time do I have?" The dialogue would suggest that both the patient and physician now regard the failure of chemotherapy as a benchmark event leading to an entirely different pathway of treatment, strangely regarded as not "active." A discussion at the time of diagnosis that indicated that Mrs Smith would receive active therapy for her nutritional problems and pain, and active assistance with psychosocial issues, fully integrated with her chemotherapy treatment, would alleviate the situation arising when the chemotherapy regime is unsuccessful. The physician can emphasize that other aspects of Mrs Smith’s active care will continue apace.

Aside from its contribution to quality of life, one may hypothesize that impeccable control of pain, nutrition, and psychosocial concerns may impact on the course of cancer in ways that are likely to prove more beneficial than gemcitabine. Cancer induces a systemic reaction with major alterations in the endocrine and neuroimmune systems. Therefore, a care plan for cancer of the pancreas that incorporates the principles of palliative care with chemotherapy strategies from onset should enhance overall quality of care and communication, and possibly length of life. Ongoing studies should help to clarify this point.

Neil MacDonald, MD

WHY DO YOU WANT TO KNOW?

The question "Doc, How Much Time Do I Have?"1 is asked daily in my radiation oncology practice. Its answer is fundamental to our approach to individual patients and helps to define the role of a physician in society.

Medical training does not prepare physicians to interact with patients in this situation. A recent review of the adequacy of information on end-of-life care in textbooks from multiple medical disciplines found that these texts offered very little helpful information on this topic.2 This highly interpersonal aspect of the doctor-patient relationship may be difficult to teach in text format. However, there are certain general components of the interaction that should be considered, as is eloquently described in the summary of this piece.1

The patient’s desire for information must be balanced with the uncertainties that exist in any one specific situation. The bridge to this balance is the art of dialogue. Prognosis of disease is not a black-and-white statistic, and communication skills are needed to navigate this delicate situation.

A recent booklet published by the American Medical Association emphasizes that we can help ease emotional pain for our patients through the use of empathic communication.3 The author concentrates on the need to discuss bad news in a proper setting, paying attention to both the perspectives of the patient and the physician during the process. The ultimate goal is "marshaling the coping mechanisms of our patients."3

There is no one-size-fits-all answer that works with every individual. The aphorism "coping is hoping" may most closely summarize my desired outcome for this clinical encounter. Louis Barnett, MD, former chairman of the University of Virginia Family Practice Department, taught that "all of us only have one day to live." It is generally much easier to cope with time in 24-hour doses. It is easier to hope to live maximally one day at a time than to consider how many good or bad days we have remaining. A promise to be with the patient through the process can help to lessen the sense of isolation and fear of the future that many experience.

When a patient asks, "How long do I have, Doc?" I ask, "What is your most important reason for wanting to know?"

The dialogue begins.

Matthew P. Mumber, MD

ADDRESS THE QUESTION

The final paragraph in the article at hand1 reads:

"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?’"

The above correspondence indicates that this piece did indeed serve as a nidus for reflection and discussion. All four of the commentaries are clearly written by knowledgeable, experienced, compassionate clinicians who have given considerable thought to caring for dying patients. There is wisdom in each of their pieces.

All four of these physicians point out that the response to the question "Doc, how much time do I have left?" should be part of a dialogue, and that to answer patients proposing such a question, it might be best for the physician to initially respond not with an answer to the proposed question, but with a question back to the patient (eg, "What is your most important reason for wanting to know?" or "What is your sense, Mrs Smith?").

Although this is a reasonable style, use of this technique does have a drawback. By having the patient respond to the returning question, the communication might start down another road and never get back around to the question at hand. In Dr Schapira’s sample dialogue, the patient does re-address the question to the physician a second time, but this doesn’t always happen.

If the patient does not re-address this painful question to the physician later on in the conversation, the physician may not get back to providing an answer to the question because either the train of thought is lost and the physician forgets to return to the subject, or it is too awkward for the physician to bring the difficult question back to be addressed. So, if a physician does choose to initially answer this question with a question, this physician has a responsibility to eventually come back to honestly and forthrightly address the posed question.

Charles Loprinzi, MD

REFERENCES

1. Loprinzi CL, Johnson ME, Steer G: Doc, how much time do I have? J Clin Oncol 18:699-701, 2000[Free Full Text]

2. Rabow MW, Hardie GE, Fair JM, et al: End of life care content in 50 textbooks from multiple specialties. JAMA 283:771-778, 2000[Abstract/Free Full Text]

3. Hinz CA: Communicating with your patients, in American Medical Association: Skills for Building Rapport. American Medical Association, 2000, pp 13-27




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