Poor Communication in Cancer Care
Poor Communication in Cancer Care
On the basis of analysis of extensive patient accounts of unhelpful communication, we have discerned 3 distinct categories of communication error corresponding to differing degrees of poor communication from patients' perspectives. We conceptualize these as occasional misses, systemic misunderstandings, and repeat offenders. Each domain reflects an experientially different kind of communicative encounter between patients and professionals and ultimately points us toward alternative directions for problem resolution.
One category of unhelpful communication that patients describe reflects unfortunate departures within what is otherwise understood as a helpful encounter. Although some of these occasional misses had a significant untoward impact on patients, their accounts suggested that, for the most part, they were willing to forgive and move onward when they recognized them as exceptions or errors within a generally appropriate communicative approach. Often, the descriptions were paired with excuses, such as "I'm sure he doesn't mean to…", "he's busy…," or "he's not mean…." These patients clearly understood that occasional misses are a part of the human condition and that clinicians can never be entirely accurate and consistent in predicting how their intended messages might be received. Some developed strategic approaches to preventing occasional misses, such as discussing the communication episode with the clinician or modifying their own communication strategy in future encounters. One patient, for example, used a published article to try to introduce the topic of communication into her discussions with her oncologist.
When I saw her last time I gave her a, a piece of information published by the AMA, and the title was Good Communication Between Healthcare Provider and Patient Leads to Better Treatment, and it was just a really short 1-page article. I just thought it would be good for all of them to read.
In many instances, they greatly appreciated the willingness they found in their clinician to work with them to ensure the most effective communication possible over time.
We know that, with skill and ongoing attention, clinicians greatly improve their odds of selecting the medium and the message most likely to produce the intended effect upon the patient. However, no matter how skillful the communicator, there will be occasions on which they get it wrong. It seems evident from the literature review that much of the communication training we deliver is targeting this kind of communication—well-intended and well-informed communicators who are simply trying to reduce the number of occasions whereby they miss the mark. Communication training tends to reflect a set of general competencies that must then be applied to an infinitely various constellation of people and circumstances. Thus, it becomes understandable why the significant investment that has been made in communication training for cancer care professionals produces incremental improvements at best. Although clinicians may well value this kind of knowledge to make their occasional misses less frequent, the benefits will not be all that meaningful or measurable, especially in the short term.
Another category of poor communication these patients described had to do with more generalized or "systemic" misunderstandings that clinicians hold as a result of the professional lens with which they view care priorities and their resultant inability to attend to the patient's perspective. As a patient put it, "from their paradigm, everything was done well; from a communication paradigm, it wasn't." Reflecting on these kinds of accounts, we were able to discern a number of "common wisdoms" that arise within the clinical community in relation to generally accepted practices that may actually create unintended harm.
One example of such a misunderstanding is the provision of excessive information in the process of securing informed consent. A number of patients described such communicative encounters as being "brutally frank" to the extent that they seemed motivated more by concern for institutional or professional liability than by the decisional and emotional support needs of the patient. One patient with advanced disease remembered being asked to make a difficult treatment decision immediately on receiving unexpected bad news. "I was very disoriented mentally because I just, I'd never been told things like that." Several patients attributed the excess of information in such circumstances as a misapplication of the philosophy of shared decision making:
It's just a whole conflict of informed consent that has come up a number of times and you know. And it's all, it's all ballyhooed and everything… informed consent is such a wonderful thing blah, blah, blah. But again I've had doctors say to me, "Well what do you want to do? Which to me is kind of laughable because, you know what, if there aredifferent options, is it up to me to make a decision? What informed consent is all… sounds like a nice concept, but how can I decide with no medical background what is the best option?
In contrast, some patients encountered what they interpreted as withholding essential information based on misunderstandings of what would be best for the patient. One woman with advanced cancer recalled, "I asked the oncologist, 'How long would it be until I die?' And she said, 'We don't talk that way around here.'" Embedded in this example is an implication that the patient had transgressed an institutional norm as to what constituted an appropriate topic for discussion.
A related instance of systemic misunderstanding pertained to the use of numeric probabilities to convey messages about the uncertain course of illness. One patient described the cognitive effect of having received numeric information this way: "It's like walking around with a loaded gun pointed at your head. You're a category 3. You have an 80% chance of reoffending again." For many, information in numeric form had a power all on its own that clinicians seemed unaware of:
It takes a lot of shifting of dialogue, you know. The doubt that's there since that number is always there, even though it's really a meaningless number that's sort of been thrown out there based on the wrong information. But just a lot of positive thought in pushing away of sort of away, but I don't know if I've fully recovered the feeling I had before.
Another patient quipped, "They're so hell-bent on giving you the facts that they forget that they don't know for certain." These examples of systemic misunderstandings remind us that while dominant discourses about the war on cancer may be a driver for healthcare providers, they may fuel inner battles and tensions for many cancer patients who take little solace from muted conversations about death or outcome probabilities.
A third example of what some patients took to be a systemic misunderstanding had to do with what they interpreted as the privileging of realism over hope. One patient recalled her physician saying, "'You know, you have to maintain a sense of realism about the situation.' And I thought, 'Yeah, it's pretty real, for me.'" The account of another patient suggested a creative way to confront what she saw as a shared misunderstanding. "My husband has just ordered me a whole lot of buttons from Monty Python's Flying Circus, which says, 'I'm not dead yet,' [laughter] and I'm, I'm intending to wear these to all my doctor's appointments and I shall even give them one each." Although irony is clearly at play in her account, the participant draws attention to how numbers and grave predictions can be received, retained, and resented, while other potentially more relevant individualized details transition across time. Analyzing these patterns within patient experience, it becomes possible to deconstruct some of the untoward effects of communications that may well be helpful and supportive for some patients but not others.
A distinct pattern of poor communication from the participants' perspectives was what we have termed the "repeat offender." This category revealed the challenge of dealing with certain clinicians who, from the patient's perspective, seemed unwilling or unable to convey basic courtesy, compassion, or respect in their communications. The accounts of these encounters reflected vivid and memorable examples of what the patients took to be characteristic attitudes for these particular clinicians. For example, a patient described the dispassionate manner in which a physician had conveyed news of her diagnosis:
He came back to my cubicle and like he was telling me I had, you know, a cold, he said to me, "Well you've got lung cancer, so I suggest you go home and get your life together because lung cancer, the average is about 8 to 10 months…. It was upsetting, but it blew me away that they would just blurt it out like it was, you know, like I had hangnails or something.
Another patient with advanced cancer described a diagnostic encounter in which she felt her experience as a human being was completely disregarded:
He sat down and he said, "You have a tumor, and it's malignant. It's called a GIST. It's inoperable and you have to take a drug called imatinib. And he stood up to leave the room. I said, "Excuse me, could you please sit down for a minute?" And he kind of looked at me and he said, "Why?" And I said, "I have some questions to ask."
A third patient described a conversation in her hospital room between her oncologist, a consulting oncologist, and 3 residents:
The consultant said, "Okay, I'll continue treating her from the head up, and you can look after her from the head down." Then a resident said to one of the others, "This disease doesn't have a good outcome in the elderly." I was in the room, but it was as if I wasn't there…. And I wanted to say, "Hello, I'm here."
A fourth confirmed, "It's like, you're just this thing going on this conveyor belt, and people are talking about what they're seeing, but there's a person attached to that." Another remembered a particularly telling encounter with her oncologist. "He acts kind of like he cares, but one time he said, 'I don't have time for anecdotes.' And then one time my husband was there, and he [the doctor] was looking at his watch!"
Beyond conveying expressions of anger and a sense of deep anguish from having encountered such individuals, many of the patients attempted to theorize about the offensive manner of some clinicians. One commented:
I think over the years what has happened is, is that they keep it so impersonal that they can't let out their own feelings. You know, like when you talk to somebody, you want to empathize. And there seems to be a lack of empathy anymore because they are so disassociated themselves, from their own feelings. 'Cause like who knows what kind of feelings they have about doing the procedures they do every day.
Another hypothesized:
The ones that are noncaring probably came into it, I would think, with maybe it wasn't the right decision for them. And maybe they've since discovered that. However it's, it's an incredible investment of time and resources and energy on their part and lots of sacrifices. So it, it must be very difficult.
As we have observed across previous cancer communication studies, most participants had encountered at least 1 clinician they characterized as repeatedly exhibiting such patterns of poor communication. Because of the high importance patients place on clinical communication to guide their thinking, feeling, and decision making and to allow them to feel that they are in safe hands in the cancer care system, it seems evident that encounters with repeat offenders may have a profoundly negative impact on their emotional and cognitive experience. While any such instance might be deeply distressing, they are naturally more potent when the clinician holds a position of particular authority in their case, such as their oncologist or surgeon, or when they must rely on such an individual for their ongoing care management. They may be reluctant or ill-equipped to leave such relationships despite intense dissatisfaction. Even when they represent a fraction of the total overall communication experience, these kinds of encounters therefore tend to be disproportionately memorable and distressing within patient accounts of communication in cancer care.
From the accounts of these patients, it would seem that serious communication problems are not uniformly distributed among clinicians, but typically concentrate around particular individuals whose lack of regard for others, or what one might consider a basic lack of emotional intelligence, or compassion fatigue, leads them to behave in a manner that could inflict harm on a regular basis. Skilled technicians of medical craft they may be, but they lack the inclination or aptitude to recognize the importance of applying it within an array of human contexts. Such individuals exist, and cancer patients routinely encounter them. Thus, a component of the solution to the cancer communication problem must be to develop systems of care within which either they are helped to change, or their potentially toxic influence is effectively managed.
Findings: A Typology of Communication Error Patterns
On the basis of analysis of extensive patient accounts of unhelpful communication, we have discerned 3 distinct categories of communication error corresponding to differing degrees of poor communication from patients' perspectives. We conceptualize these as occasional misses, systemic misunderstandings, and repeat offenders. Each domain reflects an experientially different kind of communicative encounter between patients and professionals and ultimately points us toward alternative directions for problem resolution.
Occasional Misses
One category of unhelpful communication that patients describe reflects unfortunate departures within what is otherwise understood as a helpful encounter. Although some of these occasional misses had a significant untoward impact on patients, their accounts suggested that, for the most part, they were willing to forgive and move onward when they recognized them as exceptions or errors within a generally appropriate communicative approach. Often, the descriptions were paired with excuses, such as "I'm sure he doesn't mean to…", "he's busy…," or "he's not mean…." These patients clearly understood that occasional misses are a part of the human condition and that clinicians can never be entirely accurate and consistent in predicting how their intended messages might be received. Some developed strategic approaches to preventing occasional misses, such as discussing the communication episode with the clinician or modifying their own communication strategy in future encounters. One patient, for example, used a published article to try to introduce the topic of communication into her discussions with her oncologist.
When I saw her last time I gave her a, a piece of information published by the AMA, and the title was Good Communication Between Healthcare Provider and Patient Leads to Better Treatment, and it was just a really short 1-page article. I just thought it would be good for all of them to read.
In many instances, they greatly appreciated the willingness they found in their clinician to work with them to ensure the most effective communication possible over time.
We know that, with skill and ongoing attention, clinicians greatly improve their odds of selecting the medium and the message most likely to produce the intended effect upon the patient. However, no matter how skillful the communicator, there will be occasions on which they get it wrong. It seems evident from the literature review that much of the communication training we deliver is targeting this kind of communication—well-intended and well-informed communicators who are simply trying to reduce the number of occasions whereby they miss the mark. Communication training tends to reflect a set of general competencies that must then be applied to an infinitely various constellation of people and circumstances. Thus, it becomes understandable why the significant investment that has been made in communication training for cancer care professionals produces incremental improvements at best. Although clinicians may well value this kind of knowledge to make their occasional misses less frequent, the benefits will not be all that meaningful or measurable, especially in the short term.
Systemic Misunderstandings
Another category of poor communication these patients described had to do with more generalized or "systemic" misunderstandings that clinicians hold as a result of the professional lens with which they view care priorities and their resultant inability to attend to the patient's perspective. As a patient put it, "from their paradigm, everything was done well; from a communication paradigm, it wasn't." Reflecting on these kinds of accounts, we were able to discern a number of "common wisdoms" that arise within the clinical community in relation to generally accepted practices that may actually create unintended harm.
One example of such a misunderstanding is the provision of excessive information in the process of securing informed consent. A number of patients described such communicative encounters as being "brutally frank" to the extent that they seemed motivated more by concern for institutional or professional liability than by the decisional and emotional support needs of the patient. One patient with advanced disease remembered being asked to make a difficult treatment decision immediately on receiving unexpected bad news. "I was very disoriented mentally because I just, I'd never been told things like that." Several patients attributed the excess of information in such circumstances as a misapplication of the philosophy of shared decision making:
It's just a whole conflict of informed consent that has come up a number of times and you know. And it's all, it's all ballyhooed and everything… informed consent is such a wonderful thing blah, blah, blah. But again I've had doctors say to me, "Well what do you want to do? Which to me is kind of laughable because, you know what, if there aredifferent options, is it up to me to make a decision? What informed consent is all… sounds like a nice concept, but how can I decide with no medical background what is the best option?
In contrast, some patients encountered what they interpreted as withholding essential information based on misunderstandings of what would be best for the patient. One woman with advanced cancer recalled, "I asked the oncologist, 'How long would it be until I die?' And she said, 'We don't talk that way around here.'" Embedded in this example is an implication that the patient had transgressed an institutional norm as to what constituted an appropriate topic for discussion.
A related instance of systemic misunderstanding pertained to the use of numeric probabilities to convey messages about the uncertain course of illness. One patient described the cognitive effect of having received numeric information this way: "It's like walking around with a loaded gun pointed at your head. You're a category 3. You have an 80% chance of reoffending again." For many, information in numeric form had a power all on its own that clinicians seemed unaware of:
It takes a lot of shifting of dialogue, you know. The doubt that's there since that number is always there, even though it's really a meaningless number that's sort of been thrown out there based on the wrong information. But just a lot of positive thought in pushing away of sort of away, but I don't know if I've fully recovered the feeling I had before.
Another patient quipped, "They're so hell-bent on giving you the facts that they forget that they don't know for certain." These examples of systemic misunderstandings remind us that while dominant discourses about the war on cancer may be a driver for healthcare providers, they may fuel inner battles and tensions for many cancer patients who take little solace from muted conversations about death or outcome probabilities.
A third example of what some patients took to be a systemic misunderstanding had to do with what they interpreted as the privileging of realism over hope. One patient recalled her physician saying, "'You know, you have to maintain a sense of realism about the situation.' And I thought, 'Yeah, it's pretty real, for me.'" The account of another patient suggested a creative way to confront what she saw as a shared misunderstanding. "My husband has just ordered me a whole lot of buttons from Monty Python's Flying Circus, which says, 'I'm not dead yet,' [laughter] and I'm, I'm intending to wear these to all my doctor's appointments and I shall even give them one each." Although irony is clearly at play in her account, the participant draws attention to how numbers and grave predictions can be received, retained, and resented, while other potentially more relevant individualized details transition across time. Analyzing these patterns within patient experience, it becomes possible to deconstruct some of the untoward effects of communications that may well be helpful and supportive for some patients but not others.
Repeat Offenders
A distinct pattern of poor communication from the participants' perspectives was what we have termed the "repeat offender." This category revealed the challenge of dealing with certain clinicians who, from the patient's perspective, seemed unwilling or unable to convey basic courtesy, compassion, or respect in their communications. The accounts of these encounters reflected vivid and memorable examples of what the patients took to be characteristic attitudes for these particular clinicians. For example, a patient described the dispassionate manner in which a physician had conveyed news of her diagnosis:
He came back to my cubicle and like he was telling me I had, you know, a cold, he said to me, "Well you've got lung cancer, so I suggest you go home and get your life together because lung cancer, the average is about 8 to 10 months…. It was upsetting, but it blew me away that they would just blurt it out like it was, you know, like I had hangnails or something.
Another patient with advanced cancer described a diagnostic encounter in which she felt her experience as a human being was completely disregarded:
He sat down and he said, "You have a tumor, and it's malignant. It's called a GIST. It's inoperable and you have to take a drug called imatinib. And he stood up to leave the room. I said, "Excuse me, could you please sit down for a minute?" And he kind of looked at me and he said, "Why?" And I said, "I have some questions to ask."
A third patient described a conversation in her hospital room between her oncologist, a consulting oncologist, and 3 residents:
The consultant said, "Okay, I'll continue treating her from the head up, and you can look after her from the head down." Then a resident said to one of the others, "This disease doesn't have a good outcome in the elderly." I was in the room, but it was as if I wasn't there…. And I wanted to say, "Hello, I'm here."
A fourth confirmed, "It's like, you're just this thing going on this conveyor belt, and people are talking about what they're seeing, but there's a person attached to that." Another remembered a particularly telling encounter with her oncologist. "He acts kind of like he cares, but one time he said, 'I don't have time for anecdotes.' And then one time my husband was there, and he [the doctor] was looking at his watch!"
Beyond conveying expressions of anger and a sense of deep anguish from having encountered such individuals, many of the patients attempted to theorize about the offensive manner of some clinicians. One commented:
I think over the years what has happened is, is that they keep it so impersonal that they can't let out their own feelings. You know, like when you talk to somebody, you want to empathize. And there seems to be a lack of empathy anymore because they are so disassociated themselves, from their own feelings. 'Cause like who knows what kind of feelings they have about doing the procedures they do every day.
Another hypothesized:
The ones that are noncaring probably came into it, I would think, with maybe it wasn't the right decision for them. And maybe they've since discovered that. However it's, it's an incredible investment of time and resources and energy on their part and lots of sacrifices. So it, it must be very difficult.
As we have observed across previous cancer communication studies, most participants had encountered at least 1 clinician they characterized as repeatedly exhibiting such patterns of poor communication. Because of the high importance patients place on clinical communication to guide their thinking, feeling, and decision making and to allow them to feel that they are in safe hands in the cancer care system, it seems evident that encounters with repeat offenders may have a profoundly negative impact on their emotional and cognitive experience. While any such instance might be deeply distressing, they are naturally more potent when the clinician holds a position of particular authority in their case, such as their oncologist or surgeon, or when they must rely on such an individual for their ongoing care management. They may be reluctant or ill-equipped to leave such relationships despite intense dissatisfaction. Even when they represent a fraction of the total overall communication experience, these kinds of encounters therefore tend to be disproportionately memorable and distressing within patient accounts of communication in cancer care.
From the accounts of these patients, it would seem that serious communication problems are not uniformly distributed among clinicians, but typically concentrate around particular individuals whose lack of regard for others, or what one might consider a basic lack of emotional intelligence, or compassion fatigue, leads them to behave in a manner that could inflict harm on a regular basis. Skilled technicians of medical craft they may be, but they lack the inclination or aptitude to recognize the importance of applying it within an array of human contexts. Such individuals exist, and cancer patients routinely encounter them. Thus, a component of the solution to the cancer communication problem must be to develop systems of care within which either they are helped to change, or their potentially toxic influence is effectively managed.
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