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"But Doctor, What Have I Got to Lose . . . ?"

From the Department of Medical Oncology and Palliative Care, Westmead and Nepean Hospitals, Sydney, Australia, and Department of Medical Oncology, Mayo Clinic, Rochester, MN.

Address reprint requests to Paul R. Harnett, MB, BS, FRACP, PhD, Department of Medical Oncology and Palliative Care, Westmead Hospital, Westmead, New South Wales, 2145, Australia; email: harnettpr{at}westgate.wh.usyd.edu.au

MR. SMITH IS A 54-year-old man with non–small-cell lung cancer who presented to your office following restaging evaluation after his latest round of chemotherapy. He is now on his third different chemotherapy regimen after two brief partial remissions followed by the inevitable progressions. His performance status is declining as the toxicities of chemotherapy mount. The current computed tomography scans show that once again his liver metastases have grown. After he is told this news, he is not surprised. When he is told his likelihood of responding to yet another chemotherapy regimen are slim, he replies, "But doctor, what have I got to lose?"

How often does the medical oncologist hear these sentiments, if not these precise words? The challenge for the caring clinician is to respond in the patient’s best interest—something easier said than done. Feelings of hopelessness, abandonment and terror are easily engendered by a blunt response. On the other hand, a response that does not satisfy the patient and his or her caregivers can produce a loss of confidence in the attending clinician or, worse still, ongoing requests for therapies that are unlikely to be helpful and that, at times, will come from less than reputable providers.

Most oncologists have not been trained in the communication skills necessary to constructively discuss the merits of chemotherapy that is of low yield. Thus, it is often easiest to simply devise another chemotherapy regimen. Many oncologists, however, do not believe that this is the right thing to do. An effective consultation in this situation may go something like this . . . .

Patient: "But doctor, what about trying another chemotherapy?"

Doctor: "We need to talk about this. I have always been honest with you before, and to best answer your question, we really need to put all our cards on the table. It is true that there are other types of chemotherapy we could try, but remember that we use our most effective drugs first, our next best ones second, and so on. In your case, we are now down to our fourth option. The chance of any drugs shrinking your cancer is less than 5%. On the other hand, the chance of the treatment making you sick is more than 90%, and there is a very real chance that you could end up back in hospital on drips, with no hair, new toxicities, having blood tests, and away from home again.

"If you are one of the lucky 5% where the tumor shrinks, in my experience it will only stay shrunk for a very short time, usually measured in weeks. Even if it shrinks, we do not have any evidence to say that this treatment will allow you to live any longer."

Patient: "You mean that you think I should give up?"

Doctor: "What do you mean by ‘give up’?"

Patient: "Well, that we should stop fighting the cancer. I don’t want you to give up on me. I still want to beat this thing."

Doctor: "I have no intention of giving up on you. I want to do everything I can to help you through this disease. If I could, I would like to beat this cancer too, but I don’t want to mislead you about our chances of doing that."

Patient: "Like I told you before, I want you to give it to me straight."

Doctor: "Right. So now that I have told you what we can expect from further chemotherapy, I need you to put your cards on the table also. What do you want/expect/hope for more treatment to accomplish? What are your goals for this therapy? What do you want to do with the remainder of your life?"

Patient: "I’d like to get this cancer under control, at least for a little longer. I know I’m going to die from this thing, but I was hoping for a little more time. I’d like to see more of my children and grandchildren, and I’d like to go on a trip with my wife. I thought I’d be able to do these things after the next therapy was over."

Doctor: "Let’s talk a bit about control. Up until now we have been using chemotherapy to try and get control of the cancer. When the chemotherapy isn’t working, many people feel that since their cancer is out of control, their life is out of control. They try to get control of their life by wanting another treatment. Is it like that for you?"

Patient: "Yes, a bit."

Doctor: "There is another kind of control. Some patients put it this way: ‘Since there is no treatment that will make me live any longer, and it is going to make me sick, that just isn’t good enough for me. I’ve had enough of needles and tests and scans and doctors. I want to take control of my life again by saying ‘NO THANKS’ to more chemotherapy. I will take control by deciding that I am in charge of my life, and I want quality of life and time at home without the side effects of treatment. Then I will be back in control.’

"This is a personal decision. It’s not a decision that the doctor makes alone, or one that the caregiver or your family makes, but one that you, the patient, must eventually make, after input from the health care providers, family, and friends. You should know that I personally think the side effects of further therapy outweigh any benefits.

"I must tell you that these discussions are one of the hardest parts of being an oncologist. I never really get used to it. I’m sorry if I have caused you any distress by talking this way, but unless we do talk frankly about this, we may not come to the right choice for you."

Patient (thoughtfully): "Yes, doctor, I understand. I don’t mind talking about it like this. It is hard and all, but we’ve got to face facts. I appreciate your leveling with me."

Caregiver (siting on the edge of their chair, still not fully accepting): "Yes, doctor, we understand. But since things are so bad, what do we have to lose?"

Doctor: "Yes, I know what you mean. Sometimes it’s hard to see how things could get worse. But trying another round of chemotherapy may make your you feel sick and may not allow you to accomplish the things you just told me you want to do. What you have to lose with more treatment is quality time.

"When I started in practice, in situations like this, I felt the same way, and I was inclined to give further treatment another try, even when the odds were very low, like they are now. But after having been in practice for a length of time, I remember a lot of cases like yours. I remember the occasional cases where we did get a tumor response, and we all felt happy about that and that we had made a good decision. But I also remember all the other cases I have had where we didn’t get a good response and where people became ill from treatment for no benefit, and quite frankly they did lose, because their remaining time was made miserable from a treatment that didn’t help. In fact, treatment actually robbed the patient of some quality time that they would otherwise have had.

"So the answer to your question is that we do potentially have a lot to lose."

Patient (nodding): "Yes, doctor, I understand. So whatdo we do now?"

Doctor: "Well, we can do quite a bit. We have always tried to pay close attention to how you feel, trying to minimize side effects of our therapy and relieve any symptoms your cancer has been causing. Up until now our focus has been on what the cancer has been doing, how the cancer looks on scans, and so on. But now we change that. Now we focus on you, and your symptoms, not the cancer itself. And there is a lot we can do. We need to keep seeing you, because things can change, and there will be things we can do along the way to improve how you feel. We also bring in our hospice team. They can be very helpful in keeping you feeling as well and as functional as possible. Have you ever heard of hospice before?"

There ensues a discussion about control of specific symptoms and supportive services (such as hospice) that may be available to the patient. The consultation ends with the doctor setting a date for another consultation. There are several key elements to emphasize regarding the above discussion:

(1) The patient and caregivers deserve a frank assessment of the likelihood of response and its duration. Remind the patient of their treatment history, reviewing your initial goals and the outcomes thus far. Help them to see that the tumor has become more resistant to treatment. Point out that the previous responses are getting shorter each time or that the tumor did not respond at all last time. An attempt at predicting statistical response rates may also be appropriate, but remember that the response rates seen in general oncologic practice are often lower than those seen in the selected patients who are entered onto clinical trials. Make sure the patient understands what you mean by response. Many patients think it means cure.

This is easier if you establish realistic goals early in the therapeutic relationship. Establish a definition of the benefit that includes how the patient is feeling, not just the size of the tumor. In the service of "providing hope," don’t unintentionally imply that the impossible is possible. Early on tell the patient that if the cancer becomes refractory to treatment, then hospice care becomes quite appropriate.

Point out the down side of treatment, and remind the patient of how he or she felt before treatment. The patient’s own experiences can be quite informative here.

(2) Deal with the control issue. For many patients, a feeling of loss of control is a major component of their distress. It is important to offer a strategy for regaining control, which in this context means the patient making a positive decision to choose a treatment that is not aimed at altering the course of the disease but is aimed at relieving any symptoms the disease is causing. The patient has, in effect, taken control of the circumstances by being assisted to take the initiative in his or her care. Help the patient and family to focus on their own goals, and outline a plan to help them accomplish those goals.

Both the patient and the doctor need to recognize that doctors do not stop treating patients when they stop cytotoxic therapy. Rather, a different treatment program has been chosen.

(3) What do we mean by "maintaining hope"? The issue of maintaining hope is of great importance. To continue toxic treatment solely to maintain hope of some response is inadequate medicine. To continue to allow patients and caregivers to put their hope in things that are highly likely to fail (eg, further chemotherapy) is at best ill advised and at worst avoiding the real issue. There comes a time when a patient with incurable disease is best served by placing his or her hope in things that will not fail, be it a doctor’s ongoing care, the love of the family, religious beliefs, and so on.

(4) Show the patient you care. In tragic situations such as this, it can be very appropriate to let your emotions show. It is usually helpful to the doctor-patient relationship to show the patient that you find discussing this situation distressing as well. Doctors are human too! Just make sure that the message you give is that you know what is happening, and the control you hold is knowing how to help the patient make his or her own decision. This is not an admission of failure but an exhibition of strength.

Don’t cut the patient loose at this most vulnerable time. If you believe you are fully competent to address problems in pain and symptom management, you should, possibly together with a hospice or other palliative care program, continue to provide primary support of the patient. A multidisciplinary team is required to provide the spiritual, psychosocial, medical, and emotional support this patient needs. If you are not comfortable in this role, then referral to a palliative care specialist is appropriate, with your ongoing support and care for the patient. The message you wish to impart is that you are still interested in their individual case as well as the patient as an individual human being.

Although these consultations are always difficult for all concerned, we find this approach is useful in the majority of even the most difficult cases. Moreover, seeing a terrified and dependent patient regain control and then dignity can be among the most rewarding experiences for the practicing oncologist.

This article has been cited by other articles:

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				G. P. Kalemkerian Guidelines Are Never Enough: A Commentary on "When Guidelines Are Not Enough" J. Clin. Oncol., May 1, 2007; 25(13): 1810 - 1811. [Full Text] [PDF]

				T. M. Johnson Excellence in Oncologic Care: Passion, Priority, and Performance Arch Dermatol, September 1, 2003; 139(9): 1130 - 1132. [Full Text] [PDF]

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