+ Author Affiliations
Charles Loprinzi MD Consultant Editor, “The Art of Oncology: When the Tumor Is Not the Target“
EDITOR'S NOTE
When we honestly communicate the potential pros/cons of cytotoxic therapy for patients with incurable cancer, we allow patients the ability to make informed decisions. Some choose to proceed with cytotoxic therapy; some don't.
When we hold back on the truth, either because it is too hard for us to do or because we don't want to abolish hope, we diminish the chance for an appropriately informed decision to be made. I believe that this causes us to treat too many patients for too long, for too little benefit, and without them knowing about it.
Dr Tom Smith expertly displays his methodology for honestly communicating treatment options with patients. His method puts all the cards on the table, allowing patients to make informed decisions about their care plans. Putting things down in writing allows physicians to be realistic in their goals/expectations. Is this the only way for oncologists to honestly communicate such information with their patients? No, but it certainly is worth thinking about. Let me use this background to lay out another style of providing treatment options for patients with advanced incurable metastatic cancer.
In addition to admitting that the potential cytotoxic therapy under consideration is not curative and providing a response rate (things I believe most oncologists do), I also share the following:
Mean response duration or mean time to disease progression.
Whether there is any good evidence, or even suggestive intuition, that the proposed therapy will, on average, prolong survival, compared with best supportive care, and by how much (1 month, 2 months, 6 months, and so on). I know that some of my oncology colleagues will claim that there are no good data in many of these situations, to which I reply, make your best educated guesstimate (ask expert colleagues to help with this) and so inform the patient.
That it is acceptable in many situations for a patient to decide not to receive additional cytotoxic therapy (eg, response rate of 10% to 15% for weeks to a few months on average in those few who respond and no suggestive evidence that patients receiving such cytotoxic therapy will, on average, live longer or better than those who don’t receive further cytotoxic therapy). It can be important for patients to hear that a decision to forego additional cytotoxic therapy in this situation is not akin to giving up. This allows patients to stop minimally effective and toxic therapy without experiencing inappropriate guilt.
Readers are invited to respond to the above communication suggestions and provide their clinical pearls regarding how best to communicate information about the pros/cons of noncurative cytotoxic therapy.
JANE SMITH IS A 43-year-old woman with newly diagnosed inflammatory breast cancer. She is in your office, in tears, after two visits to mammography for repeat views, two visits to the surgeon for diagnosis, a visit with the radiation therapist, and two computed tomography scans and a bone scan (for which she has not heard results).
“My doctors don’t ever talk to one another! How do I know who does what, when? And you said I have several options for treatment: cyclophosphamide, doxorubicin, and fluorouracil; doxorubicin and cyclophosphamide then paclitaxel, or both, and then maybe high-dose chemotherapy and stem-cell transplantation. How do I choose? Where do I start? Can’t I get any real information around here?”
There are some successful strategies for doctor-patient communications. A wonderful new review of all the relevant information is available, but it is relatively dense reading. This present piece will describe a written care plan that works for me and seems to work for others who have tried it. Remember that most doctors are “… sleepwalkers and not evildoers.”2 Show us a better way to do things and we will do it.
Approximately 95% of cancer patients want me to be fully honest with them about prognosis and treatment decision making.3 An easy way to determine whether an individual patient is in the majority in this regard is to ask, “How much do you want to know about your illness?” This encourages full disclosure for those who want it and gives permission to decline information for those few patients who don’t want prognostic information.
The Institute of Medicine National Cancer Advisory Board concluded that, for many cancer patients in the United States, the cancer experience was far from optimal.4 There is substantial evidence that some centers do not manage care well and have suboptimal outcomes.5 Lack of communication is a common complaint among patients and a common problem voiced by the expert panel to the Institute of Medicine report. Written plans were recommended in the Institute of Medicine National Cancer Advisory Board Report.4
Some of the barriers preventing effective communications may come from patients themselves. This may vary from patients having unrealistic expectations to being too fearful to ask questions3,6,7 (Table 1). Unrealistic expectations have received much attention recently. “The commonly held desire not to be dead”8 is one reason why patients persist in treatment that may have little chance of helping. Slevin et al9 noted that British cancer patients were willing to undergo chemotherapy with major toxicity for a 10% chance of symptom relief, when their doctors and nurses would require such a chance of more than 50%. These patients kept their preference for aggressive treatment even after they had been through chemotherapy. This suggests to me that those facing a serious illness have different values from those of us who are not, and that we had better listen if we are to help them make choices consonant with their wishes.
Patient Barriers to Communication
The Institute of Medicine expert panel noted many system characteristics that hinder communication. These are listed in Table 2.
System Characteristics That Hinder Communication
First, recognize that this is a problem. Second, try “forty seconds of compassion.” Patients are under high stress as they grapple with a complex medical system, continue to manage day-to-day life, and work to learn a whole new vocabulary essential to their well-being. Acknowledge that they have a difficult illness and that you want to help and are available.
Third, make some time for such assistance. If I have 15 minutes scheduled for a visit and someone wants answers to a dozen questions, I will make an appointment to call them at home, promise to discuss some of the issues at the next visit, or agree to do so by email.
Fourth, get some training. Most of us have no specific training in addressing all of the difficult issues that are raised by life with/after cancer. Those of us who feel least competent to address end-of-life issues, for example, are the worst at managing pain and other symptoms.11 Fallowfield et al12 have shown that seasoned surgical oncologists can learn new communication skills and appropriate confidence in giving bad news in a compassionate way.
Here are some proven—and doable—methods to try. First, have patients fill out a quality-of-life (QOL) form in the waiting room. Aaranson has shown that a standard QOL instrument, filled out in the waiting room, brings important issues to the attention of the doctor. In a randomized trial, emotional issues were addressed much more often in the groups of patients who completed the QOL instrument (Aaranson, personal communication, November 12, 1999).
Lists made by patients can be helpful.13,14 Encourage patients to keep a notebook. Also, encourage audiotapes. Tattersall et al15 showed that audiotapes of the specific conversation help. Interestingly, generic audiotapes were associated with less information remembered.
Send your patients a copy of your consultation report or letter. This has been standard practice in genetic counseling for years. A well-written consultation letter may improve care, especially if it lists the relevant problems.16 I have done this routinely for several years now and have found it to be useful in sharing information. Patients often ask for clarification or bring further information to my attention on later visits.
In trying these methods, remember that there are some additional barriers. First, approximately one in four patients in the United States is functionally illiterate; don’t be afraid to ask whether reading is a problem. Second, some treatment plans and decision making are truly complex. Third, the lack of a uniform medical record makes intersystem communication difficult. Fourth, the various places where we give care (one site for diagnostic radiology, one for radiation therapy, one for chemotherapy, and so on) make communication difficult. Finally, there is a finite limit of resources available for typing and time for communication.
The written plan described below is one way of simplifying communications. I have had extensive experience in using it, and I know that it helps me.
I can give a copy to the patient right then, so they can share it with family.
I can fax it to the primary care doctor, surgeon, and radiation therapist that afternoon.
It is a quick, permanent record of my consultation. (Did I remember to mention endometrial cancer risk owing to tamoxifen and the need for yearly gynecologic exams?)
It saves time! Believe it or not, a colleague of mine incorporated it into his practice and it actually reduced the time per initial consultation by a few minutes. It structures the interview, and contains the loquacious patient to the need-to-know information. Better communication, more efficient, less time—sounds like a winner.
This is what I do: I use official paper with a carbonless copy. I sit next to the patient, tell them they will get a copy, and begin writing so they can follow me (Table 3).
Written Plan for Communication
An example appears in Table 4 for a patient, Jane Smith, with curable but serious inflammatory breast cancer. That one was fairly easy. As devastating as breast cancer is, it is curable and patients at this stage have new bone marrow, chemotherapy-sensitive disease, and hope.
Outlining a Plan for Curative Treatment
What about the other end, when patients have multidrug-resistant disease? As a friend says, “I still carry around hope but the handles are getting a little bit frayed.” Here is how I would use the written plan to make the switch to palliative care (v continuing with fifth-line chemotherapy if someone wants it).
This example shows one method of making the change to palliative care. Jane Smith’s cancer has grown despite doxorubicin and cyclophosphamide, paclitaxel, tamoxifen, radiation, and, most recently, capecitabine. Her performance status has declined to Eastern Cooperative Oncology Group 3, and she is wavering on whether she wants to think about more chemotherapy (Table 5). This allows you to make a concrete plan for hospice care. Remember to be realistic about prognosis so you can refer to hospice early enough. Doctors typically overestimate prognosis by a factor of 5!.18
Outlining a Plan for Palliative Care
Complicated measures are not needed. Just ask. A telephone call the next day from your office to see how things are going is always greatly appreciated, takes little time, and is surprisingly gratifying to do.
The doctor wins—better comprehension, honest communication, and more efficient use of time. This is also a wonderful practice builder. If you can write all of this down, then you become the expert. From my experience, better communication will expand your referral base better than any advertisements. And most importantly, the patient wins—with better comprehension, honest communication, and a plan.
Supported in part by a grant from the Office of Cancer Communications, National Cancer Institute, Bethesda, MD (RFP CO 94388-63), and a faculty scholar award from the Project on Death in America, Open Society Institute, New York, NY.
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