The First Visit
The first visit can have many different purposes—a patient may talk about a presenting symptom, a diagnostic test may have shown an abnormality requiring further workup, or a diagnosis of cancer may need to be discussed, including further staging and workup or treatment options. Even if the first visit is not a difficult conversation, it is worth remembering that this encounter sets the tone for the entire relationship that ensues. While little empirical study has occurred about the first visit specifically, communication research does indicate the value of a couple of practices that enable physicians to get the relationship off to a good start and use the time allocated to the appointment efficiently.
1. Negotiate an Agenda for the Visit
The first practice is to begin the visit by negotiating an agenda for that visit. This negotiation has the following steps. Clarify the patient's understanding of the reason for the appointment and his/her expectations. When the patient appears to be done, asking “Is there anything else?” can be an effective probe that helps elicit concerns that patients may otherwise hold until the end of the visit.29 The physician should then explain whether there are any medical issues that she feels it is important to cover that day. Then the physician can propose a way to use the visit—the topics that will be covered, any examination that is necessary, any tasks like jointly viewing an x-ray, and a summary of what was covered and the next steps—and ask the patient for feedback. The value of this brief negotiation and joint agreement, even though it takes a minute, is to set expectations for both the patient and physician about what can be done in the time available for that visit. It can also help the physician avoid encountering new, important, and complex questions at the very end of the visit.
2. Learn About the Patient's Views of the Illness
While this is not a standard history question, it can be extremely useful to ask a question about how the patient views his/her illness.30 For example, “I know you've heard about it from other doctors, but tell me what you think is going on with your cancer?” This can provide data about the patient's understanding, his/her ways of coping, and the meaning of the illness. This can help the physician use time efficiently by customizing the discussion to the needs of the patient.
3. Ask About the Patient As a Person
A variety of empirical studies indicate that patients place considerable importance on the feeling of being treated like a whole person. While it is impossible for physicians to learn everything about a patient in the first visit, it is often easy in the course of a visit to explore something about a patient's life outside the clinic or hospital: “Tell me about yourself so I can begin to get to know you.”31 This can function as an invitation to a richer relationship.
4. Express Your Interest in Improving the Patient's Well-being
While it is easy to assume that patients know you are working on their behalf, it is nonetheless important to state explicitly your intention to provide the best care possible. Being explicit helps align you with the patient and family and sends a clear message about your commitment.32,33, 
5. Discuss Ways That Patients Can Participate in Their Own Care
Although many patients are interested in what they can do to participate in their care,34 physicians can be hesitant to make requests of patients undergoing a course of anticancer therapy. One way of viewing the physician-patient relationship is a partnership in which both parties need to participate in different ways.
Giving Bad News
This is perhaps the communication task that has been studied the most extensively.35 Bad news can be defined as any information that adversely alters one's expectations for the future. Oncologists give bad news thousands of times during the course of a career and it can be highly stressful. In a large survey of oncologists, 20% reported anxiety and strong emotions when they had to tell a patient that their condition would lead to death.12 In a more detailed study of 73 physicians, 42% indicated that, despite the fact that the stress often peaks during the encounter, the stress from a bad news encounter can last for hours—even up to three or more days afterward.36 Giving bad news is more difficult when the clinician has a long-standing relationship with the patient, when the patient is young, or when strong optimism had been expressed for a successful outcome. On the other hand, when bad news is communicated in an empathic manner, it can have an important impact on outcomes such as patient satisfaction and decreased patient anxiety and depression; and the physician's caring attitude can be more important than the information or reassurance given.37 As with any medical procedure, giving bad news requires a coherent strategy in order for it to be accomplished successfully. In this case the strategy encompasses a series of six distinct communication steps, that can be summarized using the mnemonic SPIKES.38 This protocol includes recommendations endorsed by practitioners and patients (Table 2).39
Table TABLE 2. Giving Bad News with SPIKES
|S = Setup|
|P = Perception|
|I = Invitation|
|K = Knowledge|
|E = Empathize|
|S = Summarize and strategize|
Prepare yourself with the necessary medical facts, take a moment to have a plan in your mind, and find a quiet place if possible. Ask yourself how difficult it will be to have the discussion; it maybe worthwhile to have a nurse or social worker accompany you. Turn your pager off or give it to someone else so you are not interrupted. Sit down, make eye contact, and get reasonably close to the patient. Anticipate that the patient will be upset and have tissues available.
Find out the patient's perception of the medical situation. What has he/she been told about the disease? What does he/she know about the purpose of the unfavorable test results you are about to discuss? If this is a first contact, what has he/she been told about why he/she should see you in referral? What are his/her expectations of treatment? What are his/her goals? Correct any misconceptions or misunderstandings the patient may have. Note any strong denial or its mimics (eg, avoidance of topics or excessive optimism).
Find out how much information the patient wants. These days most patients want a lot of information but this is not universally true, especially as the disease progresses and patients may want to focus on “What do we do next?”
Use language that matches the patient's level of education. Be direct. Avoid using jargon as it will confuse the patient. Give a warning that bad news is coming: “I have some serious news to tell you.” This will allow the patient to prepare psychologically. If the patient's perception (step 2) was inaccurate, review pertinent information: “Now you remember we sent you for the MRI to assess how the chemo was working? Well, what we found is that the chemo has not worked. The tumor has grown larger.” After giving this news, stay quiet for at least 10 to 15 seconds—resist the urge to tell the patient how to feel. Give the patient time to absorb the information and respond.
Use empathic statements to respond to patient emotions. This will assist in patient recovery and dampen the psychological isolation that the patient experiences when they hear the bad news. If a patient begins to cry, remember NURSE and use an empathic response such as, “I know that this must be disappointing for you.” Resist the temptation to make things better; for example, rushing to propose a treatment that is unlikely to work. This kind of response can be a reaction to your own sense of helplessness and perhaps of failure. Ask if the patient has questions or concerns and keep asking until he/she says no.
6. Summarize and Strategize
Summarize the clinical information and make a plan for the next step, which may be further testing or discussion of treatment options. Be as concrete as possible and check on the patient's understanding of what has been discussed: “Does this make sense to you?” or ”Are you clear about the next steps?”
Making Anticancer Treatment Decisions
A number of empirical studies demonstrate that patients are interested in having some role in decision making; the question is, what kind of role does the patient wish to have? Table 3 describes a spectrum of different types of patient involvement in decision making according to five different theoretical models, from paternalism to consumerism.40 As the data from this study involving 999 women with early breast cancer indicate, most patients desire some decision-making role for both patient and physician, and a majority prefer shared decision making. One of the reasons for patient interest in the Internet for medical information is to enable them to verify treatment options they are offered and to check about options that were not offered.41 Shared decision making does not have to take more time and is associated with greater patient satisfaction. How can it be put into practice?
Table TABLE 3. Preferences for Medical Decision Making of 999 Women with Breast Cancer
|Paternalistic||Physician makes decisions||18|
|Physician as agent||Physician makes decisions after considering patient input||17|
|Shared decision making||Physician and patient make decision together||44|
|Informed decision making||Patient makes decisions after considering physician input||14|
|Consumerism||Patient makes decisions||9|
1. Elicit Patient Preferences for Information and Decision Making
This can be done with a couple of questions: “Are you the kind of person who wants to hear all the information, both good and bad, about this illness? People vary in how they want to make medical decisions. Some people want to make the decisions themselves, some people want to share decision making with the doctor, and some people want the doctor to make the decisions. Where do you stand?”
2. Identify the Choice To Be Made
A common pitfall for physicians is to launch into an explanation of a treatment before identifying the choices that the patient is dealing with. Providing the patient with a roadmap of the conversation in a sentence or two can give a sense of what lies ahead. “There are basically two different treatment options for us to consider for metastatic pancreatic cancer. I'll tell you what they are before I describe them in more detail. Then you can ask any questions you might have. The first option is…”
3. Describe Treatment Options and Confirm Understanding
Most patients say that they want all available information, and many clinicians say that they observe patients becoming overwhelmed during the course of a visit about treatment options. It is useful to give information in small chunks (a useful rule of thumb is to give no more than three pieces of information at a time) and check patient understanding: “Are you following me?” or “Did that make sense to you?” This allows the physician to titrate the amount of information that can be covered in a particular visit. Confirming understanding can also enable the physician to correct misperceptions or inaccuracies. Since emotions can shape perceptions and decision making, it is useful to respond empathetically to the patient's emotions: “It sounds like this information is different from what you expected, and I think it would be upsetting for anyone.”
Reinforce accurate understanding: “I agree that Option 1 would be the roughest in terms of side effects.” If necessary, add further information as relevant to ensure that patient's thinking is medically accurate and expectations are reasonable: “Well, let me say more about Option 2. The oral chemo is easier to take but it does not shrink the cancer as often as the IV chemo.”
Offer to give numerical information: “Are you the kind of person who likes to hear all the numbers?” If the patient says yes, then continue: “The IV chemo will shrink the cancer for about two out of three cases, and in one of three cases the cancer will not shrink and may even grow despite chemo.” Notice that this statement is double-framed—the doctor has mentioned both how often the cancer responds and how often it does not respond.
Offer to talk about prognosis: “Some patients want to know how much longer they have to live. Is that something you want to talk about?” If yes, respond with something like, “Well, we know that for patients who have this kind of cancer, if they have the chemo, they live from months to a year, and on rare occasions, somewhat longer. If they choose not to have the chemo, they live for a few weeks.”
4. Discuss How the Patient's Values and Concerns Relate to the Treatment Options
For patients who want the physician to take a role in decision making, it is useful to step back and relate the biomedical information to the patient's larger values and concerns. “Now could we step back for a minute—I'd like to know whether you have a sense of how these treatment options relate to the concern you mentioned earlier about ‘not wanting to end up like your aunt.’” Or the physician can simply ask for the patient's reaction: “What's your reaction to all this?” Increasing physician participation in the conversation is an effective way to increase patient satisfaction.22
5. Offer to Make a Personal Recommendation
Because trust in the physician is a significant issue in treatment choice,42 it is worth offering a personalized recommendation based on medical expertise and knowledge of the patients' values and concerns. Even if the patient wishes to make the decision himself, this recommendation can be framed as another piece of data, the judgment of an experienced clinician: “Would you like to hear my recommendation at this point?” If the patient answers yes: “Based on what I've heard from you so far, the most important consideration for you is quality of life, and you're concerned about the side effects of the chemo, especially if it does not work. But you are also concerned about wanting to be present for your daughter's graduation in 4 months. So I think for you it would be worth giving the IV chemo a try, knowing that you could stop if the side effects are too much. What do you think about that?”
6. Negotiate a Timeframe for the Decision
Ask how much time the patient needs to finish making a decision. Ask what other family members or friends the patient may want to talk with during the decision-making process. Ask if any other information would assist them in decision making. When the patient decides on a time frame (eg, “I'll come back in two days and tell you”), verify that the time frame is reasonable. If the patient's proposed time frame is not clinically practical (eg, two days for a patient in the ICU when you need a decision in the next two hours), ask for the reason underlying the patient's time frame decision, show you understand the reason, but state the reason why the time frame is not practical and suggest an alternative that incorporates their preferences to some degree.
Offering Clinical Trials
The empirical studies that have been done on clinician communication with patients about clinical trials describe a wide variation in how physicians talk about research, and there are no studies yet that correlate physician presentation with patient willingness to participate or even patient understanding. Ethicists emphasize that informed consent is a process, yet little research has addressed how physicians can guide the process. Although patients indicate they are interested in a high level of information,43 it is also clear that many patients and families leave conversations with a poor understanding of clinical trial characteristics such as randomization.44 The possibility of clinical trial participation usually occurs when physicians and patients are discussing treatment options. Thus these recommendations build on the preceding recommendations about discussing treatment options.
1. When Introducing the Treatment Options, Describe the Clinical Trial as One of the Treatment Options
In creating a roadmap for the conversation as described in the section earlier, the clinical trial should be mentioned alongside standard treatment: “There are three different treatment options for us to consider for metastatic pancreatic cancer. I'll tell you what they are before I describe them in more detail. Then you can ask any questions you might have. The first option is chemotherapy intended to slow the growth of the cancer. The second option is a clinical trial of a new medicine intended to slow the growth of the cancer (a Phase II trial). The third option is supportive and palliative care without anticancer therapy. While supportive care will be part of any treatment plan, at times we focus completely on quality of life.” The clinical trial can be described as an alternative to the “best therapy we currently know”—ie, standard therapy.
2. When Talking About the Clinical Trial Option, Ask About the Patient's Perception of Research and Clinical Trials
In the same way that eliciting a patient's perception of his/her illness helps a physician individualize communication, eliciting the patient's perception of research can help a physician improve patient understanding of a clinical trial: ”I was wondering if you have ever thought about being in a research study like a clinical trial? Could you tell me your thoughts and concerns, if you have any?” These concerns, which in studies range from patient concerns about harm, patient interest in the latest treatments, patient difficulties with practical logistical issues such as transportation, and patient concerns about trust in research, are important to get on the table for discussion.
3. Make It Clear That Opting for a Clinical Trial Is Something That the Patient Needs to Actively Choose
Prepare the patient for participating in research: “Being in a clinical trial is a little bit different from receiving one of the treatments that are part of standard care. You will need to actively choose to be in a trial, and part of this is reading and signing consent forms that are more involved than if you were being treated with the best-known treatments not on a clinical trial. The consent forms will go through the possible benefits and possible risks in considerable detail. If the trial involves randomization, make it clear that in this type of trial neither the patient nor the patient's personal physician selects the exact treatment.
4. Describe How a Patient Can Withdraw from the Clinical Trial
One of the fundamental things that a patient who is a potential research subject needs to understand is the right to withdraw from the trial at any time for any reason. “It's important to know that you can withdraw from the clinical trial at any time, and for any reason. You just need to tell us that you would like to withdraw.” However, for many oncologic clinical trials, there may be treatment side effects that linger, and in some types of research (ie, stem cell transplants) it may not be possible to simply withdraw. In these cases, the consequences of withdrawing early need to be explained.
5. Discuss How the Patient's Medical Care Will Be Transitioned at the End of the Trial, or If He/She Withdraws
When a patient is seeing a physician specifically because of an available clinical trial, that physician should discuss how medical care will be transferred back to the patient's primary oncologist or physician after the participation in the clinical trial has ended or if the patient withdraws.
Completing Anticancer Therapy Given with Curative Intent
The end of a planned course of anticancer therapy is a source of ambivalent feelings for many patients. While it is a relief to be finished with anticancer therapy and its side effects, many patients also worry about not being watched as carefully, losing the support of their medical providers, and cancer regrowth if chemotherapy is no longer ongoing. In addition, as patients begin to resume activities that have been on hold, they often discover new concerns that they are unprepared to deal with, including sexual concerns and economic consequences of being out of work.
1. Acknowledge the Patient's Contribution to the Treatment
It is hard work at many levels to complete a course of anticancer therapy, and it is important for physicians to recognize the effort, sacrifice, and hard work that patients put into their anticancer therapy. “Congratulations! You have really worked hard and dealt with a lot to get to this point, and I appreciate your cooperation. I think you have done a great job.”
2. Invite Any Concerns That Might Be Related to Finishing Anticancer Therapy
This could start with a normalizing statement: “Many patients tell me that while they are excited to be done, they also have concerns about finishing. Do you have any concerns that you want to talk about?” Or: “Some patients wonder if their cancer could return and I was wondering if that is something you'd like to talk about.” Respond empathetically to emotional concerns using NURSE.
3. Discuss a Concrete Follow-up Plan
For patients to cooperate with a follow-up plan, they need to understand what the plan consists of and the rationale. This may require discussion of tests that are not being done routinely as much as discussion of tests that will be done: “I recommend that you return to clinic every three months for the first year, with the following tests…, and every six months after that.”
4. Mention the Possibility of Survivorship Issues and Useful Resources
The physician could say: “Many patients find that they are dealing with issues related to being a cancer survivor at some point after they finish their treatment. One useful resource that I think is good is the National Coalition for Cancer Survivorship (www.canceradvocacy.org). They have some programs specifically designed for survivors. Also know that you can call us back anytime if you have concerns.”
Discontinuing Palliative Chemotherapy in the Setting of End-of-Life Care
In the context of an ongoing clinician-patient relationship, palliative care issues can become part of an ongoing dialogue and early discussion can facilitate symptom control, decision making, and opportunities for life closure.45,46,  Yet one of the most challenging tasks faced by oncologists is talking to a patient with a life-threatening cancer about discontinuing palliative chemotherapy that has proven itself to be ineffective. Although this is well known to oncologists as a challenge, there has been little empirical study of this task, perhaps because of the difficulty of capturing these conversations.
This section is not meant to imply that Phase I or Phase II clinical trials are not worth offering. We support the importance of Phase I and Phase II clinical trials and feel they have an important place in the cancer therapeutic regimen. We also are aware of data that indicate that patients generally enter Phase I trials because they hope to benefit, even if the physician, discussions, and consent form all say that the trial is designed to benefit other, future patients.
Studies suggest that oncologists lacking communication skills training are more likely to prescribe third- and fourth-line chemotherapy,12 and there is a substantial volume of chemotherapy given in the US outside standard indications, even in the last three months of life.47 When oncologists discuss the possibility of discontinuing chemotherapy, they often have feelings of guilt and failure that they were unable to rescue the patient from impending death.48 Patients and their families may inadvertently worsen oncologists' feelings of guilt by saying, “Isn't there something you can do?”
1. When Starting Palliative Chemotherapy, Explicitly Discuss How Progress Will Be Evaluated and the Criteria for Continuing or Discontinuing Chemotherapy
Framing palliative chemotherapy up front as a therapeutic trial can be a helpful tool. Rather than focusing strictly on benefits and risks, this discussion would also talk about how progress will be evaluated, when this evaluation will occur, and what will happen as a result. “We will repeat your CT scan after two months of chemotherapy. If the CT shows that the cancer is shrinking, we will continue the chemotherapy at that point for at least two more months. If the CT shows that the cancer is growing larger, we will stop the chemotherapy.”
In preparing patients for the time when palliative chemotherapy will be discontinued, it is worth mentioning that if a patient is not receiving anticancer benefit, they are nonetheless receiving all the toxic side effects. It may also be worth mentioning that palliative chemotherapy regimens have not been documented to be of benefit for patients whose performance status is 3 or 4, and that for those patients cytotoxic chemotherapy may hasten death rather than prolong life.
2. Discuss Clinical Evidence That Indicates Treatment Failure
This may require a bad news conversation (see earlier section), although the perception step may focus more on the patient's expectations regarding reevaluation—they may not recall the conversation described above. It is important to work with their perception in that moment rather than remind them and quiz them about a conversation that happened two or more months previously.
3. Step Back to Address “The Big Picture” by Using Questions That Elicit Patient Values
Here we recommend that the physician specifically direct the patient into a conversation about values and goals before going to the issue of what next (Table 4): “In short, it looks like the chemotherapy has not been working. So now I would like to step back for a minute and talk about the big picture. Given this situation, which I know you're disappointed about, what is most important to you now?” Other useful questions to elicit patient values include: “What is your life like outside the clinic (or hospital)?” “What are your biggest concerns right now?” “What do you enjoy doing? How can we help you do more of that?” or “When you think about the future, what concerns you the most?”
Table TABLE 4. Key Questions to Elicit Patient Values When Initiating Discussions About Palliative Care
|What do you enjoy doing now?|
|What is life like outside the hospital/clinic?|
|What is most important to you right now?|
|What is the hardest part of this for you and your family?|
|When you think about the future, what concerns you most?|
For patients who respond that the most important thing is to “live as long as possible,” one potential response is to talk about how further chemotherapy at this point would do more harm than good. For patients who respond that the most important thing is to “have more chemotherapy,” a potential response is to ask, “If that is not possible, what would be the next most important thing?”
Some patients have not previously thought about these issues and aren't ready to articulate them. Those patients may simply need some space and silence within your conversation so they can think, and allowing silence is important. In some instances, after silence has passed, patients may still be at a loss and you may want to volunteer important patient values. A qualitative interview study identified important qualities of end-of-life care that can be useful to suggest to patients who are stuck: “We know from studies of patients that there are some things that most people are concerned about. These things are: (1) good pain and symptom control; (2) strengthening relationships with loved ones; (3) relieving burden on family; (4) achieving a sense of control; (5) avoiding inappropriate prolongation of dying.”49
4. Respond to Patient Emotion and Acknowledge Loss
In the setting of advanced cancer, it is particularly important to acknowledge patient losses, which may include dreams, hopes, and functional abilities. Having a clinician acknowledge loss can reassure patients that their loss was important and worth grieving. Disregarding loss or failing to acknowledge it can send an inadvertent message that the patient's concerns are unimportant. There is a tendency among oncologists to respond to patient distress with more chemotherapy. Yet using the tools we have discussed above for responding empathetically, it is possible to distinguish and deal with sadness, grief, anger, and worry without fixing these emotions. Clinicians can make it clear that they will support and accept patients and their emotions during difficult times.
Both patients and clinicians are concerned about supporting patient hope, and in our opinion it is possible for clinicians to discuss hopes throughout the course of treatment50 and also to acknowledge hopes without necessarily endorsing them. Using “I wish” statements can be a useful tool to acknowledge what patients are hoping for and align with their hopes and also acknowledge that their hopes cannot be fulfilled (Table 5).51 For example, an oncologist might say “I wish I had a kind of chemotherapy that could cure this metastatic cancer.”
Table TABLE 5. Difficult Questions and Responses That Acknowledge Underlying Emotions
|“How long do I have to live?”||“I wonder if it is frightening not knowing what will happen next, or when.”|
|“Does this mean you're giving up on him?”||“Absolutely not. But tell me, what do you mean by giving up?”|
|“Are you telling me that I am going to die?”||“I wish that were not the case, but it is likely in the near future. I am also asking, how would you want to spend the remaining time if it were limited?”|
5. Propose a New Care Plan Based on the Patient's Values and Goals
By using the patient's own values and goals, it is possible to align with them even without providing more chemotherapy. “So based on your goal of wanting to stay at home as much as possible so you have time to spend with your family and friends, I propose that we do the following…” Make a recommendation about things that will be done first, and mention things that will not be done, including palliative chemotherapy, afterward. The things to be done might include hospice; the things that will not be done might also include CPR and mechanical ventilation.
If patients and/or family members request treatment that you feel is futile, physicians may feel that their competence or judgment is not trusted. More often these requests are generated by patients' feelings of desperation, complex family relationships, or family dynamics. It is worth thinking through a “differential diagnosis” of what is going on with a given patient and family.52 Finally, we note that while most requests for futile therapy can be addressed by understanding patient and family concerns—especially emotional concerns—we also recognize that a small number of these requests are persistent and go beyond a communication issue. In those cases, we suggest talking to an ethics committee, palliative care service, or other resources for negotiation in your health system.
6. Propose a Time to Follow Up and Reassess This New Plan
This will make it clear that the oncologist deals with the patient, not simply the chemotherapy, and will reassure patients and family that there will be more time in the future to deal with difficult issues. “So let's try this for a month. I'd like to see you back in the clinic after a month, and see how things are going.” This follow-up is useful to offer even if the patient will be seen by hospice in the interim because it makes it clear that the physician is not abandoning the patient when chemotherapy is no longer the treatment of choice.