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Communication with the cancer patient: Patient-physician communication: a clinician's view
Patient-physician communication: a clinician's view DJ. Theo Wagener UMC St. Radboud, Department of Medical Oncology, Nijmegen, The Netherlands
Introduction Doctors give good news gladly. From the point of view of consulting technique, very little can go wrong when the news is good. And even if the way the news is given is less than perfect, the positive message means that any communication difficulties are soon forgotten. Unfortunately, however, it is common that in oncology it is not good news but bad news that has to be communicated. And today this is more often the case than it was in former days: in the past when the news was bad the doctor would take refuge in less threatening statements, veiled terminology or white lies, purely for the patient's benefit. This way of behaving, which fits in with the authoritarian, paternalistic relationship between doctor and patient, was, in those days, accepted by the community. However, a number of significant changes have taken place in social relationships. And these changes have also had repercussions on the doctor-patient relationship and, as a consequence, on communication. However, giving good information about adverse matters requires training. We tend to shy away from doing things we are not trained to do. One axiom in medical practice runs: "Do not do anything unless, you know what to do when things go wrong". If there has been no training in discussion techniques, there has been no practice at how to cope with the effects of the discussion and the doctor does not know what to do for example, when a patient becomes angry or starts to cry. When one does not know how to cope with the effects of a bad news discussion, there is a reluctance to enter into it in the first place. The fear of being seen as the cause of the bad news or as the person who was not able to reverse the situation also has an inhibiting effect. Since doctors often have to give bad news, the fear of this kind of discussion must be overcome; it must be done in a professional manner. In order to structure the talk about how to communicate with the patient with cancer, the topic will be
First stage: the initial contact The first stage in the doctor-patient relationship is the initial contact between the doctor and the patient. It is the period before any tests have led to a diagnosis. This contact is the same for all patients, whether they are seen because of a benign disease or because of metastatic cancer. In this stage it is always important to win trust. When a discussion goes wrong in the early stages, it may be because of external circumstances or aspects relating to discussion techniques [1]. External circumstances At all stages (also those after the first contact) one must pay attention to the following points. A friendly reception It is important that those people who have the very first contact with the patient, such as the receptionist, nursing staff, or the doctor's assistant radiate friendliness and concern. This creates an atmosphere of trust and it is important for the coming contact with the doctor. The appointments system Even before the patient is seen by the doctor, the doctor can ensure that the conditions for a good relationship are as favourable as possible, simply by having a good system for making appointments, which keeps the patients waiting-time to a minimum. If, for whatever reason, the doctor is unable to keep to the agreed time, he should make sure the patient knows it. And if possible, give the reason for the 57
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
discussed in relation to the three stages in the doctorpatient relationship. The first stage is the phase of initial contact, the second stage includes the actual telling of the diagnosis and the outlook; the third stage is the period of the continued relationship.
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delay and also an indication of the time he expects to be able to see the patient. A handshake It is important that the patient is greeted with a handshake. A handshake is a non-verbal means of diminishing fear when two people meet who do not yet know each other: the handshake is an indication of peaceful intentions and in a metaphorical sense shows that no weapons are being carried. Furthermore, together with eye contact, a handshake can express sympathy, which is so important for a good start to the discussion.
Do not remain seated It is wrong to remain seated at one's desk, when the patient comes in. The doctor should at least stand up or even better, he/she should take a few steps towards the patient. Care should also be taken that the patient does not sit too far away from him since this also creates distance in a figurative sense. Quiet surroundings One should make sure that there is nothing in the immediate surroundings that may disturb and may cause the discussion to be unsuccessful, such as noise, colleagues making noises while walking in and out of the room, a telephone that rings constantly. It is important to indicate that there is no time pressure. This does not mean that you may not work efficiently, but the patient should feel that while in the consulting room, he/she is the most important subject for the doctor. Eye contact The first contact we have with another person is eye contact. At a glance we see the whole person, his/her build, posture, clothing, behaviour and appearance, but in a fraction of a second all this is forced into the background by eye contact We lay ourselves open in this eye contact, experience how the other is, experiencing ourselves and how we experience this. Feelings of sympathy and antipathy are engendered in those first few seconds. Good eye contact shows that you are open for someone. Poor eye contact may be a reason for an unsuccessful discussion. The best height of contact is eye level. Someone who looks
Body language Our body also has a role to play in communication. This is referred to as body language, which involves all manners of transferring information without the use of words. Body language includes facial expression, eye contact, posture and physical movement. Body language can emphasise, clarify and reinforce the verbal information, but it can also tone down what has been said. The gestures made by a good listener are limited and subdued. When listening, one makes encouraging gestures such as nodding one's head or making inviting movements with the hands. Technical aspects of the talk Introductory open questions Introductory questions are important when starting the discussion. An attempt should be made to avoid closed questions. Closed questions are questions to which only one or two short answers can be given, e.g. "Are you in pain?" It is much better to start the discussion with an open question, such as "Tell me what seems to be the problem" [2]. Give the patient the opportunity to say what he wants to say and do not be too ready to interrupt him. No jargon Another reason for an unsatisfactory discussion is the use of the wrong kind of language. The doctor needs to adapt to the level of the patient. For this reason he/she should use simple words and short clear sentences. One should ask whether the patient has understood what has been said and avoid jargon.
Second stage: the phase of telling the diagnosis and the expectations The second stage in the relationship between the doctor and the patient with cancer is absolutely crucial. This stage can be divided into two parts. In the first part the patient is informed about the diagnosis; in the second part the expectations are discussed. Giving information Whereas a number of decades ago, when the doctor came to the conclusion that his patient had an illness with an unfavourable prognosis, most of the time
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
A smile It is also important to start with a smile, a friendly facial expression. People do not tend to smile at someone they instinctively dislike or despise. A smile is the best way to start up a conversation and has something creative about it.
at the floor when talking appears to be uninterested, which provokes a feeling of rejection. Looking up gives the impression of arrogance.
Patient-physician communication: a clinician's view
the doctor would not inform the patient of the true diagnosis because "the patient would not be able to cope". Nowadays the majority of doctors has a different view on this and does inform their patients about the true nature of their illness.
External circumstances Sufficient privacy When telling the patient the diagnosis, there are a number of things the doctor should bear in mind.
The consultation must be held in an area, which is sufficiently private, so that the patient can express his/her feelings without being embarrassed. Involve close relatives in the discussion In order to avoid misunderstanding, it is good to involve relatives in the discussion. The advantage of involving close family is that usually the reaction of the patient to the discussion is less emotional and the given information is absorbed better. Furthermore, the patient and his/her relatives can go deeper into what has been discussed immediately following the discussion. It is not wise to give specific information to only one party. There is the chance that partners would attempt to keep information hidden from each other. Partners can sense this most of the time and it is bad for the relationship in precisely that situation when they need each other. When the doctor talks to the patient and family at the same time, it gives the patient the idea that he/she is being told the truth and that no information is being withheld. It also lays the basis for bond of trust between doctor and close relative, which is very important in the future support of the patient. Technical aspects of the talk Good preparation A doctor should study the patient file thoroughly before embarking on a conversation with the patient on "bad news". He/she needs to know exactly the results of the tests that have been carried out and should avoid giving the impression he/she has not prepared the case in every possible detail. Patients should get the idea that the doctor knows everything about them. Take time It is important that the doctor takes time to talk with the patient and avoids a monologue. He/she should adjust the speed of talking to the speed at which the patient is able to understand what is being said. The doctor should invite the patient to talk. Repeating what the patient has said is, from a discussion technique point of view, of vital importance. Listening Listening is more than hearing. It is absorbing what has been said together with the entire unspoken context. Active listening is more than just listening. Active listening demands considerable ability on the part of the doctor in his/her discussion with the patient. Active listening is more difficult than speaking and is therefore the most difficult part of the discussion.
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
Why give the diagnosis? The point of view of those who are not willing to inform their patients about the nature of the disease are more based on an emotional reaction than on a rational approach to the situation. They argue that informing the patient of a diagnosis with a poor prognosis only leads to depression, fear and sometimes to suicide. However the suicide rate appears to give little support to this view [3,4]. Depression is observed in 20-30% of patients with cancer and it seems to be the case that the existence of depression is often not acknowledged. It is certain that a period of coming to terms characterised by distress will nearly always be seen sooner or later. The question remains whether shifting this period by postponing the time information is given, offsets the disadvantages of giving the news at an earlier stage. Many doctors think that informing the patient of an unfavourable prognosis will disrupt the close relationship between them and the patient. However, it appears that patients who are not informed about their diagnosis often find out the truth in other ways, for example: through other patients and doctors or simply from the own intelligent observations. A number of different reasons can be given in favour of informing the patient. For example: it is not possible to tell the patient that there is nothing serious going on and then propose surgical intervention, radiotherapy or chemotherapy. The patient will not accept the intervention or the side effects of these therapies and it will not be possible to complete these treatments. Informing the patient is also important for social and legal reasons. Some patients may wish to make financial arrangements, others may wish to leave messages for friends, children or colleagues, or may wish to make funeral arrangements. Moreover, informing the patients of the diagnosis is important in order to reach an honest understanding with the patient. However, the main reason for informing the patient of his/her diagnosis is that they simply want to know. Even if the message is emotionally very difficult to cope with.
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Breaks It is important that during the discussion the doctor does not talk continuously, something the inexperienced doctor tends to do. Moments of silence are important for the patient to assimilate what he/she is being told. One should also take a short break when changing subject. The various therapeutic possibilities should not be presented in the same breath as informing the patient about the seriousness of the diagnosis. Reactions from the patient
Fears It is important to realise that many fears can arise in a patient when he is confronted with a fatal illness. There may be fear of the physical symptoms of pain or nausea, of requiring help through paralysis or diminished mobility. There is often fear of the treatment itself, such as fear of the side-effects of chemotherapy, with hair loss, nausea and vomiting, fear of radiation, with fatigue and burning, fear of the operation, with pain and mutilation, or change of body image as the result of surgical intervention e.g. colostomy, mastectomy. There may also be fear of psychological effects, for instance not being able to cope with the illness, or fear of a mental breakdown, of losing one's mind of becoming senile. There may also be a fear of death itself, existential fear, religious concerns, fear of hell and damnation. In addition there may be fear for the relationship with family members and friends, worries about what is to become of the children, or of being less sexually attractive to one's partner or functioning less in that sense. Fear of being a burden to the other, fear of losing one's position, one's role in the family. Finally, there is sometimes fear and worry about financial matters, such as the costs of the treatment or outstanding loans. Every patient has his own unique combination of fears and worries [5].
What the patient should be told depends very much on the individual patient. This is a medical skill for which there are no fixed rules. The doctor should give the patient the information he/she needs immediately, but there is no need to tell the patient everything. By listening to the patient's life history an attempt should be made to gain an insight into three things: firstly, how does the patient see his/her situation? Has the patient actually considered "cancer" or is he/she looking for the cause of the illness in a completely different direction? Secondly, how has he/she experienced and coped with previous experiences of loss, such as the death of his/her parents or family members or the loss of his/her job? Thirdly: to whom can the patient turn to for help? Does he/she live alone, does he/she have a partner, adult children, etc.? Discussing the expectation The doctor should not say anything more than he knows for certain, in particular with respect to survival time. The doctor can best react to questions about the prognosis with an attempt at convincing the patient that an answer would not help him/her, because no doctor is able to give an accurate answer and must, therefore, refer to statistics which are of no value to the individual patient. If the patient very definitely wants to know everything and is not satisfied with an answer that is not very precise, it is better to build in an open end in what you say. For example: one should not say: "You have six months to live", but: "There is a 20% chance you will be alive in six months time" or even better: "There is a slight chance that you are alive after six months". How it is said to the patient It may be best to start the conversation with the statement that you have some bad news to tell and then proceed to tell the patient the diagnosis. The message should be brought with feeling and respect A cold professional distance often means the message is more of a blow than need be. An insensitive approach can have a long-lasting effect on the patient's well-being. It is better to say, "You have a kind of cancer" than "You have cancer"; in this way diminishing the heavy load of the word cancer. The treatment: concluding the discussion Curative therapy When curative therapy is an option, communication with the patient has a positive tone. However, it
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
The initial reaction of a patient who is being told he/she has a progressive, fatal illness, varies considerably, but is usually one of disbelieve and denial. The patient experiences it as numbness, which is a kind of self-protection against sudden, intense threat. Doctors often see their patients in a denial phase. This denial is not a particular problem, as long as it does not interfere with the treatment or with good medical planning. These defence mechanisms are essential to the patient, and the doctor should not take them away.
What the patient should be told
Patient-physician communication: a clinician's view
is unwise to assure of a 100% cure. Even after a successful operation the doctor should be cautious in what he/she says with respect to cure. It is all too easy to say that the patient is cured since doctors like to be the givers of good news. However, disappointment and sometimes resentment can be considerable, should a recurrence occur any time after this kind of remark
The third stage: the ongoing relationship The third stage in the doctor-patient relationship is the phase of the continued relationship with the patient and his family. Discussion during the treatment As long as the patient is under treatment, there is always hope that this treatment will be successful; this gives the patient the considerable support, particularly when treatment is heavy. However, the patient will experience many difficult periods during which he/she needs to be encouraged. No treatment possible Once the patient has been informed about the diagnosis and has heard that there is no treatment for his/her particular tumour, or he/she is told that the given treatment will not be successful and no further treatment is possible his/her world is in turmoil. What does the future hold? The most important message he/she wants to hear from you in this phase is: "Whatever happens to you, I'll do my utmost to help you" [6].
The approaching end Fear of the words "cancer" and "death" There is often reluctance to talk about "cancer" or "death". However this reluctance is unnecessary and sometimes even inappropriate. Patients with symptoms are seldom surprised to hear they have cancer or they are going to die. Very often patients themselves have thought about having cancer. Also the' approaching end is often not a surprise. One should not avoid the term's "cancer" and "death" in the discussion with the patient and not hide behind terms such as "malignant growth" or "tumour". What is not said out loud, may start to lead its own life in fears and fantasy and becomes much worse than the reality. By actually saying the words "cancer" or "death", the doctor is showing that he/she is not afraid of illness or death and stands above it. It is only from this position that one can be a good advisor. However these words should not be used in a discussion with the patient unless the doctor has ample time to go deeper into the subject and to be in a position to answer all questions [7].
Further reading DJ.Th. Wagener. Communication with the cancer patient. In: Medical oncology for non-oncologists with focus on solid tumors. Ann Oncol 2000; in press.
References 1 Geizler L. Artz und Patient-Begegnung im GesprSch. PharmaVerlag, Frankfurt, 1987. 2 Blau JN. Time to let the patient speak. Br Med J 1989; 298: 39. 3 Achte KA, Vauhkonen ML. Cancer and the psyche. Omega 1971; 2: 46-56. 4 Faberow NL, Schneidman ES, Cutter F, Reijnolds D. An eightyear survey of hospital suicides. Life Threat Behav 1971; 1: 184-202. 5 Buckman R. Communication in palliative care: a practical guide. In: D Doyle, GWC Hanks, N MacDonald (eds), Oxford Textbook of Palliative Medicine. Oxford University Press, Oxford, 1993, pp 47-61. 6 Twycros RG, Lack SA. Therapeutics in Terminal Care. 2nd Edition. Churchill Livingstone, Edinburgh, 1990. 7 Cassell EJ. Talking with patients. I. The Theory of Doctorpatient Communication. MTT Press, Cambridge, MA, 1985.
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
Palliative therapy When palliative treatment is proposed it is essential to state explicitly that the treatment can not lead to cure. The doctor should not trivialise the side effects of chemotherapy or radiotherapy and should discuss the pros and cons of possible therapies with respect to side-effects in order to help the patient with the decision: to treat or not to treat, and if to treat, what is the best option. The doctor should guide the patient on how best to cope with the situation.
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Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
Introduction Doctors give good news gladly. From the point of view of consulting technique, very little can go wrong when the news is good. And even if the way the news is given is less than perfect, the positive message means that any communication difficulties are soon forgotten. Unfortunately, however, it is common that in oncology it is not good news but bad news that has to be communicated. And today this is more often the case than it was in former days: in the past when the news was bad the doctor would take refuge in less threatening statements, veiled terminology or white lies, purely for the patient's benefit. This way of behaving, which fits in with the authoritarian, paternalistic relationship between doctor and patient, was, in those days, accepted by the community. However, a number of significant changes have taken place in social relationships. And these changes have also had repercussions on the doctor-patient relationship and, as a consequence, on communication. However, giving good information about adverse matters requires training. We tend to shy away from doing things we are not trained to do. One axiom in medical practice runs: "Do not do anything unless, you know what to do when things go wrong". If there has been no training in discussion techniques, there has been no practice at how to cope with the effects of the discussion and the doctor does not know what to do for example, when a patient becomes angry or starts to cry. When one does not know how to cope with the effects of a bad news discussion, there is a reluctance to enter into it in the first place. The fear of being seen as the cause of the bad news or as the person who was not able to reverse the situation also has an inhibiting effect. Since doctors often have to give bad news, the fear of this kind of discussion must be overcome; it must be done in a professional manner. In order to structure the talk about how to communicate with the patient with cancer, the topic will be
First stage: the initial contact The first stage in the doctor-patient relationship is the initial contact between the doctor and the patient. It is the period before any tests have led to a diagnosis. This contact is the same for all patients, whether they are seen because of a benign disease or because of metastatic cancer. In this stage it is always important to win trust. When a discussion goes wrong in the early stages, it may be because of external circumstances or aspects relating to discussion techniques [1]. External circumstances At all stages (also those after the first contact) one must pay attention to the following points. A friendly reception It is important that those people who have the very first contact with the patient, such as the receptionist, nursing staff, or the doctor's assistant radiate friendliness and concern. This creates an atmosphere of trust and it is important for the coming contact with the doctor. The appointments system Even before the patient is seen by the doctor, the doctor can ensure that the conditions for a good relationship are as favourable as possible, simply by having a good system for making appointments, which keeps the patients waiting-time to a minimum. If, for whatever reason, the doctor is unable to keep to the agreed time, he should make sure the patient knows it. And if possible, give the reason for the 57
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
discussed in relation to the three stages in the doctorpatient relationship. The first stage is the phase of initial contact, the second stage includes the actual telling of the diagnosis and the outlook; the third stage is the period of the continued relationship.
58
D.J.T. Wagener
delay and also an indication of the time he expects to be able to see the patient. A handshake It is important that the patient is greeted with a handshake. A handshake is a non-verbal means of diminishing fear when two people meet who do not yet know each other: the handshake is an indication of peaceful intentions and in a metaphorical sense shows that no weapons are being carried. Furthermore, together with eye contact, a handshake can express sympathy, which is so important for a good start to the discussion.
Do not remain seated It is wrong to remain seated at one's desk, when the patient comes in. The doctor should at least stand up or even better, he/she should take a few steps towards the patient. Care should also be taken that the patient does not sit too far away from him since this also creates distance in a figurative sense. Quiet surroundings One should make sure that there is nothing in the immediate surroundings that may disturb and may cause the discussion to be unsuccessful, such as noise, colleagues making noises while walking in and out of the room, a telephone that rings constantly. It is important to indicate that there is no time pressure. This does not mean that you may not work efficiently, but the patient should feel that while in the consulting room, he/she is the most important subject for the doctor. Eye contact The first contact we have with another person is eye contact. At a glance we see the whole person, his/her build, posture, clothing, behaviour and appearance, but in a fraction of a second all this is forced into the background by eye contact We lay ourselves open in this eye contact, experience how the other is, experiencing ourselves and how we experience this. Feelings of sympathy and antipathy are engendered in those first few seconds. Good eye contact shows that you are open for someone. Poor eye contact may be a reason for an unsuccessful discussion. The best height of contact is eye level. Someone who looks
Body language Our body also has a role to play in communication. This is referred to as body language, which involves all manners of transferring information without the use of words. Body language includes facial expression, eye contact, posture and physical movement. Body language can emphasise, clarify and reinforce the verbal information, but it can also tone down what has been said. The gestures made by a good listener are limited and subdued. When listening, one makes encouraging gestures such as nodding one's head or making inviting movements with the hands. Technical aspects of the talk Introductory open questions Introductory questions are important when starting the discussion. An attempt should be made to avoid closed questions. Closed questions are questions to which only one or two short answers can be given, e.g. "Are you in pain?" It is much better to start the discussion with an open question, such as "Tell me what seems to be the problem" [2]. Give the patient the opportunity to say what he wants to say and do not be too ready to interrupt him. No jargon Another reason for an unsatisfactory discussion is the use of the wrong kind of language. The doctor needs to adapt to the level of the patient. For this reason he/she should use simple words and short clear sentences. One should ask whether the patient has understood what has been said and avoid jargon.
Second stage: the phase of telling the diagnosis and the expectations The second stage in the relationship between the doctor and the patient with cancer is absolutely crucial. This stage can be divided into two parts. In the first part the patient is informed about the diagnosis; in the second part the expectations are discussed. Giving information Whereas a number of decades ago, when the doctor came to the conclusion that his patient had an illness with an unfavourable prognosis, most of the time
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
A smile It is also important to start with a smile, a friendly facial expression. People do not tend to smile at someone they instinctively dislike or despise. A smile is the best way to start up a conversation and has something creative about it.
at the floor when talking appears to be uninterested, which provokes a feeling of rejection. Looking up gives the impression of arrogance.
Patient-physician communication: a clinician's view
the doctor would not inform the patient of the true diagnosis because "the patient would not be able to cope". Nowadays the majority of doctors has a different view on this and does inform their patients about the true nature of their illness.
External circumstances Sufficient privacy When telling the patient the diagnosis, there are a number of things the doctor should bear in mind.
The consultation must be held in an area, which is sufficiently private, so that the patient can express his/her feelings without being embarrassed. Involve close relatives in the discussion In order to avoid misunderstanding, it is good to involve relatives in the discussion. The advantage of involving close family is that usually the reaction of the patient to the discussion is less emotional and the given information is absorbed better. Furthermore, the patient and his/her relatives can go deeper into what has been discussed immediately following the discussion. It is not wise to give specific information to only one party. There is the chance that partners would attempt to keep information hidden from each other. Partners can sense this most of the time and it is bad for the relationship in precisely that situation when they need each other. When the doctor talks to the patient and family at the same time, it gives the patient the idea that he/she is being told the truth and that no information is being withheld. It also lays the basis for bond of trust between doctor and close relative, which is very important in the future support of the patient. Technical aspects of the talk Good preparation A doctor should study the patient file thoroughly before embarking on a conversation with the patient on "bad news". He/she needs to know exactly the results of the tests that have been carried out and should avoid giving the impression he/she has not prepared the case in every possible detail. Patients should get the idea that the doctor knows everything about them. Take time It is important that the doctor takes time to talk with the patient and avoids a monologue. He/she should adjust the speed of talking to the speed at which the patient is able to understand what is being said. The doctor should invite the patient to talk. Repeating what the patient has said is, from a discussion technique point of view, of vital importance. Listening Listening is more than hearing. It is absorbing what has been said together with the entire unspoken context. Active listening is more than just listening. Active listening demands considerable ability on the part of the doctor in his/her discussion with the patient. Active listening is more difficult than speaking and is therefore the most difficult part of the discussion.
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
Why give the diagnosis? The point of view of those who are not willing to inform their patients about the nature of the disease are more based on an emotional reaction than on a rational approach to the situation. They argue that informing the patient of a diagnosis with a poor prognosis only leads to depression, fear and sometimes to suicide. However the suicide rate appears to give little support to this view [3,4]. Depression is observed in 20-30% of patients with cancer and it seems to be the case that the existence of depression is often not acknowledged. It is certain that a period of coming to terms characterised by distress will nearly always be seen sooner or later. The question remains whether shifting this period by postponing the time information is given, offsets the disadvantages of giving the news at an earlier stage. Many doctors think that informing the patient of an unfavourable prognosis will disrupt the close relationship between them and the patient. However, it appears that patients who are not informed about their diagnosis often find out the truth in other ways, for example: through other patients and doctors or simply from the own intelligent observations. A number of different reasons can be given in favour of informing the patient. For example: it is not possible to tell the patient that there is nothing serious going on and then propose surgical intervention, radiotherapy or chemotherapy. The patient will not accept the intervention or the side effects of these therapies and it will not be possible to complete these treatments. Informing the patient is also important for social and legal reasons. Some patients may wish to make financial arrangements, others may wish to leave messages for friends, children or colleagues, or may wish to make funeral arrangements. Moreover, informing the patients of the diagnosis is important in order to reach an honest understanding with the patient. However, the main reason for informing the patient of his/her diagnosis is that they simply want to know. Even if the message is emotionally very difficult to cope with.
59
60
D.J.T. Wagener
Breaks It is important that during the discussion the doctor does not talk continuously, something the inexperienced doctor tends to do. Moments of silence are important for the patient to assimilate what he/she is being told. One should also take a short break when changing subject. The various therapeutic possibilities should not be presented in the same breath as informing the patient about the seriousness of the diagnosis. Reactions from the patient
Fears It is important to realise that many fears can arise in a patient when he is confronted with a fatal illness. There may be fear of the physical symptoms of pain or nausea, of requiring help through paralysis or diminished mobility. There is often fear of the treatment itself, such as fear of the side-effects of chemotherapy, with hair loss, nausea and vomiting, fear of radiation, with fatigue and burning, fear of the operation, with pain and mutilation, or change of body image as the result of surgical intervention e.g. colostomy, mastectomy. There may also be fear of psychological effects, for instance not being able to cope with the illness, or fear of a mental breakdown, of losing one's mind of becoming senile. There may also be a fear of death itself, existential fear, religious concerns, fear of hell and damnation. In addition there may be fear for the relationship with family members and friends, worries about what is to become of the children, or of being less sexually attractive to one's partner or functioning less in that sense. Fear of being a burden to the other, fear of losing one's position, one's role in the family. Finally, there is sometimes fear and worry about financial matters, such as the costs of the treatment or outstanding loans. Every patient has his own unique combination of fears and worries [5].
What the patient should be told depends very much on the individual patient. This is a medical skill for which there are no fixed rules. The doctor should give the patient the information he/she needs immediately, but there is no need to tell the patient everything. By listening to the patient's life history an attempt should be made to gain an insight into three things: firstly, how does the patient see his/her situation? Has the patient actually considered "cancer" or is he/she looking for the cause of the illness in a completely different direction? Secondly, how has he/she experienced and coped with previous experiences of loss, such as the death of his/her parents or family members or the loss of his/her job? Thirdly: to whom can the patient turn to for help? Does he/she live alone, does he/she have a partner, adult children, etc.? Discussing the expectation The doctor should not say anything more than he knows for certain, in particular with respect to survival time. The doctor can best react to questions about the prognosis with an attempt at convincing the patient that an answer would not help him/her, because no doctor is able to give an accurate answer and must, therefore, refer to statistics which are of no value to the individual patient. If the patient very definitely wants to know everything and is not satisfied with an answer that is not very precise, it is better to build in an open end in what you say. For example: one should not say: "You have six months to live", but: "There is a 20% chance you will be alive in six months time" or even better: "There is a slight chance that you are alive after six months". How it is said to the patient It may be best to start the conversation with the statement that you have some bad news to tell and then proceed to tell the patient the diagnosis. The message should be brought with feeling and respect A cold professional distance often means the message is more of a blow than need be. An insensitive approach can have a long-lasting effect on the patient's well-being. It is better to say, "You have a kind of cancer" than "You have cancer"; in this way diminishing the heavy load of the word cancer. The treatment: concluding the discussion Curative therapy When curative therapy is an option, communication with the patient has a positive tone. However, it
Downloaded from http://annonc.oxfordjournals.org/ at University of Hawaii - Manoa on June 19, 2015
The initial reaction of a patient who is being told he/she has a progressive, fatal illness, varies considerably, but is usually one of disbelieve and denial. The patient experiences it as numbness, which is a kind of self-protection against sudden, intense threat. Doctors often see their patients in a denial phase. This denial is not a particular problem, as long as it does not interfere with the treatment or with good medical planning. These defence mechanisms are essential to the patient, and the doctor should not take them away.
What the patient should be told
Patient-physician communication: a clinician's view
is unwise to assure of a 100% cure. Even after a successful operation the doctor should be cautious in what he/she says with respect to cure. It is all too easy to say that the patient is cured since doctors like to be the givers of good news. However, disappointment and sometimes resentment can be considerable, should a recurrence occur any time after this kind of remark
The third stage: the ongoing relationship The third stage in the doctor-patient relationship is the phase of the continued relationship with the patient and his family. Discussion during the treatment As long as the patient is under treatment, there is always hope that this treatment will be successful; this gives the patient the considerable support, particularly when treatment is heavy. However, the patient will experience many difficult periods during which he/she needs to be encouraged. No treatment possible Once the patient has been informed about the diagnosis and has heard that there is no treatment for his/her particular tumour, or he/she is told that the given treatment will not be successful and no further treatment is possible his/her world is in turmoil. What does the future hold? The most important message he/she wants to hear from you in this phase is: "Whatever happens to you, I'll do my utmost to help you" [6].
The approaching end Fear of the words "cancer" and "death" There is often reluctance to talk about "cancer" or "death". However this reluctance is unnecessary and sometimes even inappropriate. Patients with symptoms are seldom surprised to hear they have cancer or they are going to die. Very often patients themselves have thought about having cancer. Also the' approaching end is often not a surprise. One should not avoid the term's "cancer" and "death" in the discussion with the patient and not hide behind terms such as "malignant growth" or "tumour". What is not said out loud, may start to lead its own life in fears and fantasy and becomes much worse than the reality. By actually saying the words "cancer" or "death", the doctor is showing that he/she is not afraid of illness or death and stands above it. It is only from this position that one can be a good advisor. However these words should not be used in a discussion with the patient unless the doctor has ample time to go deeper into the subject and to be in a position to answer all questions [7].
Further reading DJ.Th. Wagener. Communication with the cancer patient. In: Medical oncology for non-oncologists with focus on solid tumors. Ann Oncol 2000; in press.
References 1 Geizler L. Artz und Patient-Begegnung im GesprSch. PharmaVerlag, Frankfurt, 1987. 2 Blau JN. Time to let the patient speak. Br Med J 1989; 298: 39. 3 Achte KA, Vauhkonen ML. Cancer and the psyche. Omega 1971; 2: 46-56. 4 Faberow NL, Schneidman ES, Cutter F, Reijnolds D. An eightyear survey of hospital suicides. Life Threat Behav 1971; 1: 184-202. 5 Buckman R. Communication in palliative care: a practical guide. In: D Doyle, GWC Hanks, N MacDonald (eds), Oxford Textbook of Palliative Medicine. Oxford University Press, Oxford, 1993, pp 47-61. 6 Twycros RG, Lack SA. Therapeutics in Terminal Care. 2nd Edition. Churchill Livingstone, Edinburgh, 1990. 7 Cassell EJ. Talking with patients. I. The Theory of Doctorpatient Communication. MTT Press, Cambridge, MA, 1985.
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Palliative therapy When palliative treatment is proposed it is essential to state explicitly that the treatment can not lead to cure. The doctor should not trivialise the side effects of chemotherapy or radiotherapy and should discuss the pros and cons of possible therapies with respect to side-effects in order to help the patient with the decision: to treat or not to treat, and if to treat, what is the best option. The doctor should guide the patient on how best to cope with the situation.
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