1.  Communication with the patient and family in palliative medicine.

2.  Talking with families and children about the death of a parent.

3.       Communication between professionals.

 

Communication and palliative medicine

Talking about sad, bad, and difficult things with patients and their families is a fundamental and an inevitable part of the health-care professional’s (HCPs) work, but one in which few have received sufficient help or training. In efforts to protect patients from uncomfortable and distressing facts, professionals and nurses frequently censor their information giving in the mistaken belief that what someone does not know does not harm them. This misguided albeit well-intentioned assumption is made at all stages of the disease trajectory. Less-than-honest disclosure is apparent when a patient first reports suspicious symptoms, at confirmation of the diagnosis, when the putative therapeutic benefits of treatment are discussed, at recurrence or relapse, and towards the end of life. Most attempts by professionals to protect patients from the reality of their situation often create further problems to patients, their relatives, and their friends. Furthermore, it can lead to inconsistent messages being given by other members of the multi-disciplinary team. Economy with the truth often leads to conspiracies of silence that usually build up to a heightened state of fear, anxiety, and confusion, rather than one of calmness and equanimity. The kinds of ambiguous or deliberately misleading messages received by patients may afford them short-term benefits while things continue to go well, but it has unfortunate long-term consequences. A patient with a shortened or uncertain future needs time and space to reorganize and adapt their life towards the attainment of achievable goals. Realistic hopes and aspirations can only be generated from honest disclosure. In this chapter, evidence from research studies will be provided showing that although communicating the truth can be painful, deceit may well provoke greater problems. Some suggestions will also be made about practical ways to communicate about difficult issues in palliative care.

 Communication with the patient and family in palliative medicine

Introduction

Talking about sad, bad, and difficult things with patients and their families is a fundamental and an inevitable part of the health-care professional’s (HCPs) work, but one in which few have received sufficient help or training. In efforts to protect patients from uncomfortable and distressing facts, professionals and nurses frequently censor their information giving in the mistaken belief that what someone does not know does not harm them. This misguided albeit well-intentioned assumption is made at all stages of the disease trajectory. Less-than-honest disclosure is apparent when a patient first reports suspicious symptoms, at confirmation of the diagnosis, when the putative therapeutic benefits of treatment are discussed, at recurrence or relapse, and towards the end of life. Most attempts by professionals to protect patients from the reality of their situation often create further problems to patients, their relatives, and their friends. Furthermore, it can lead to inconsistent messages being given by other members of the multi-disciplinary team. Economy with the truth often leads to conspiracies of silence that usually build up to a heightened state of fear, anxiety, and confusion, rather than one of calmness and equanimity. The kinds of ambiguous or deliberately misleading messages received by patients may afford them short-term benefits while things continue to go well, but it has unfortunate long-term consequences. A patient with a shortened or uncertain future needs time and space to reorganize and adapt their life towards the attainment of achievable goals. Realistic hopes and aspirations can only be generated from honest disclosure. In this chapter, evidence from research studies will be provided showing that although communicating the truth can be painful, deceit may well provoke greater problems. Some suggestions will also be made about practical ways to communicate about difficult issues in palliative care.

Good palliative care presents substantial clinical, nursing, communication, and emotional challenges for all HCPs. If accomplished well, palliative care can also offer tangible, satisfying, professional and personal benefits. It might well be assumed that a speciality dealing with the care of dying people would appeal to those who possess not only good clinical and communication skills but also attitudes and beliefs compatible with openness towards honest disclosure and truth-telling. Although the skills required for the provision of physical care may be excellent, effective communication is often less well-honed. Questionable approaches towards honest disclosure may be the consequence of poor training or may represent unawareness of the impact that dishonesty has on patients; it may also demonstrate genuine differences in cultural expectations. For example, Bruera et al. conducted an interesting postal survey which examined the attitudes and beliefs of palliative care specialists towards communication with the terminally ill. Respondents were based in French-speaking Europe, South America (Argentina and Brazil), and Canada. Every clinician said that they would like to be told the truth about their own terminal illness. However, only 93 per cent of Canadian physicians, 26 per cent of European clinicians, and 18 per cent of South American clinicians thought that the majority of their patients would wish to know (P = 0.001). Similar attitudes prevailed when clinicians were asked to estimate how many relatives would want patients to know about the terminal nature of their illness. Clearly what clinicians think that their patients want and what the patients and their families actually want is often very different. The evidence for really substantial cultural differences regarding patients’ actual rather than assumed information needs about prognosis is in fact rather thin or inconclusive. For example, well-conducted studies by Fielding and Hung in Hong Kong challenge the notion that Asian patients with cancer and their families want less information than their Western counterparts. There are some studies however that suggest that different cultures may cope with the diagnosis of life-threatening disease in different ways. One such study showed that after being told their diagnosis Asian patients were significantly more fatalistic (P < 0.0001) than white Caucasian patients and had more significant hopeless/helpless scores (P = 0.007) on the Mental Adjustment to Cancer Scale. Asian patients were also more likely to agree with the statement ‘I don’t really believe that I have cancer’ (P = 0.019). Denial was significantly related to depression and anxiety but the study did seem to suggest that Caucasian patients appear to adapt to the psychological trauma of a cancer diagnosis more successfully than Asian patients at the initial interview. A vital clinical point to make is that HCPs should make concerted efforts to base their communication on an individual’s expressed preference, whatever their cultural background, and not make assumptions about the needs of different ethnic groups.

Information needs of patients and their families

It is of course important to determine the information needs of patients if people are to be able to give informed consent and make educated decisions. Their future management might include further treatment options or participation in Phase I trials, but people cannot contribute to these decisions if they lack the necessary information. A recent review of studies looking at communication and informed consent in Phase I trials showed that many patients had limited understanding of the trial purpose, an unrealistic expectation of the benefits and risks of participation, and a questionable appreciation of their right to abstain or withdraw. Patients desperate and hopeful for a miracle cure may not recognize that the primary aims of many Phase I studies are dose escalation and clinicians can unwittingly be somewhat ambiguous about likely therapeutic gains of participation. Good palliative and supportive care is rarely presented as a positive option, instead it can be seen by patients and their families as ‘giving up’ or ‘giving in’ rather than bravely fighting on with further active interventions. Professionals therefore need to consider carefully the manner in which options are discussed.

Truthful communication about the future is also vital if patients are to be permitted the dignity of deciding how to spend their remaining time. Unfortunately, professionals worldwide seriously underestimate not only the information needs of their patients but also their preferences about decision-making. As seen in a recent systematic review, some patients express a desire for more limited information at different time points during the course of their disease, but they represent the minority, most want considerably more than they are given. Research conducted in the United Kingdom by Jenkins et al. with a large heterogeneous sample of 2331 patients with cancer showed that 2027 (87 per cent) wanted all possible information, be that good or bad news. A subsequent more recent audit by this group examining information needs and actual experiences of a different group of patients revealed multiple gaps in information provision despite a strong desire for information expressed by around 87 per cent irrespective of age, sex, tumour site, or stage of disease. It interesting that the figures seem to be fairly consistent across different heterogeneous samples of patients with cancer in both these studies. Similarly, a study of the parents of children with cancer showed that 87 per cent wanted as much information as possible about prognosis.

Some professionals argue that honest disclosure is reasonable in patients for whom cure is a realistic prospect but that when the outlook is bleak then they are less likely to provide full information. Results from an extension to the study by Jenkins et al. make this position untenable. They compared the general information preferences of 1032 palliative treated patients with those of 1777 patients receiving potentially curative treatment or who were in remission. Irrespective of treatment intent, the overwhelming majority of patients expressed a preference for the professional to give as much information as possible, be that good or bad news. Slightly more of the palliatively treated patients (7.3 per cent) than the non-palliative group (3.9 per cent) wanted additional information only if it was good news (P < 0.001) although the numbers of patients overall who endorsed this option were very small (144/2809). Little difference was found when the more specific information needs of palliative and non-palliative groups were compared, although there were some interesting sex differences. In general, women wanted more information than men for most items (P < 0.01), although both men and women had an equal need to know whether or not it was cancer and what the chances of cure were. Among the palliatively treated patients the sex differences disappeared, with the majority of men and women wanting the same sorts of information apart from the chances of cure, where again more women than men wanted this information (P = 0.021).

Table 6.1.1 Specific information preferences of patients with cancer.

 

Absolutely need/would like to have (per cent)

Do not want information (per cent)

Palliative

Non-palliative

Palliative

Non-palliative

Specific name of the illness

87

91

13

9

Whether or not it is cancer

98

98

2

2

Week-by-week progress

90

93

10

7

Chances of cure

93

97

7

3

All possible treatments

94

95

6

5

All possible side effects

97

97

3

3

How treatment works

91

93

9

7

The effect of age was also examined; in general, younger patients under 65 years wanted more information than those over 65 (P < 0.01) apart from knowing their chances of cure, where needs were the same irrespective of age. Among the palliatively treated patients, more of the younger people wished to know about the specific name of the cancer they had, what all possible treatments were, and how any treatments worked (P < 0.01).

Appraisal of these results suggests that the intuitive censoring of information that many professionals engage in on the grounds that patients prefer not to know is unfounded. Patients may feel isolated and scared that nothing can or will be done to help them if professionals fail to give adequate information about test results, potential ways of managing symptoms, and the true therapeutic aim of different treatments. Precisely at a time when the majority of people are most in need of truthful communication and support, when they have changing thoughts and feelings and need to make important decisions, a conspiracy of silence may envelop them, and the resulting anxiety and tension may hinder adjustment.

Decision-making preferences of patients in palliative care

As we have seen, patients want considerably more information than is often provided to enable them to understand the logic behind treatment recommendations made by HCPs, but how involved do they wish to be in decision-making? Desire for more information and actual participation in decision-making are not one and the same thing. Certainly, in the non-palliative setting there is a large body of evidence suggesting that for women newly diagnosed with breast cancer, many wished to assume a more passive role in decision-making than a general population sample or women with benign breast disease, who tended to prefer more active or collaborative roles. Importantly, this research has also revealed how poor professionals often are at recognizing which patients desire active or more passive roles.

The iterative process of discussion and information exchange which forms the basis for shared decision-making is often somewhat lacking in early stage disease and in palliative care has received less attention. In one study of 78 patients in a palliative setting, the concordance between clinicians’ perceptions of their patients’ preferences and patients’ actual perceptions showed that only 38 per cent of the cases matched. The clinicians tended to underestimate patients’ desire for more shared decision-making. Patients’ age or sex had no influence on the accuracy of prediction. More recently researchers examined the way 102 breast cancer patients perceived their decisions about embarking on palliative chemotherapy. The medical oncologist was seen as the most important person influencing decision-making. Forty-seven per cent of women preferred a passive role, 15 per cent a shared role, and 38 per cent an active role. As with other studies age, ethnicity, education and partnership status did not predict preferences but interestingly patients discussing second-line therapy were more likely to wish for an active role. As professionals manifestly lack the skills to identify patient preferences accurately, it would seem sensible for a clinic nurse to assess this prospectively prior to the patient meeting with the professional. Card sort techniques such as those described by Degner and Sloan are an effective means of ensuring that patient preferences are met. One cautionary note, however, is that preferences may well change over time as disease progresses, thus decision-making preferences need to be checked regularly as the coping strategies employed by patients are more dynamic and adaptive than is sometimes thought.

 

Communication and stress experienced by families

When patients become progressively sicker and increasingly dependent as they approach the end of their lives, different family members may have to assume responsibility for many of the roles fulfilled previously by their ill relative such as household tasks or caring for children. The primary carer may also have less time to spend with other family members, all of whom may also have to help out in the home or with caring for the dying person. Coping with conditions such as incontinence can also be difficult for both the carers and the now dependent ill person. Witnessing pain and the alterations in physical appearance or personality of a loved one can also be deeply distressing. Thus, the whole family can become stressed by the emotional burdens and extra responsibilities placed on them. The changed dynamics of family life can be exhausting, as well as upsetting. Some carers feel so worn down by the daily demands that feelings of despair, depression, and resentment are very common. In an interesting retrospective questionnaire based study of 379 relatives (spouses and children) of people who had recently died, many respondents felt that they had had limited opportunities to talk to any professional carers about the difficulties they had experienced with everyday life whilst their relative was dying. Other studies have shown that the factors considered important to patients and families may differ considerably from those viewed as important by health-care professionals, hence the need to communicate well and check what is required rather than just assume needs are being met.

Emotional impact of communication in palliative care on professionals and nurses

There is a wealth of evidence suggesting that a reluctance to give bad and sad news probably reflects the difficulty that professionals experience conveying this type of information as much as a desire to protect patients from the distress such knowledge provokes. Some of the reasons why professionals and nurses have problems with this area can be seen in Table 6.1.2.

Table 6.1.2 Some reasons for professionals’ problems.

Inadequate skills due to poor training

Fear of provoking emotional distress

Not knowing how to handle an emotional outburst

Worries about containing one’s own emotions

Fear of being blamed by patients and relatives for failure

Over identification with certain patients

Having to confront one’s own fears about death

Inadequate communication skills

In the course of a professional career spanning perhaps 40 years, an oncologist in the United Kingdom is likely to conduct around 150 000–200 000 interviews with patients and their families. Thus, communication is a core clinical skill, yet one in which few professionals have received much useful training. Many are aware that this lack of training contributes to their own stress and burnout. Among palliative care physicians in the United Kingdom 32 per cent said that they felt insufficiently trained in communication. The good news is that properly structured, intensive communication skills courses employing cognitive, behavioural, and affective components have been shown in a randomized trial to significantly improve cancer professionals’ skills in clinics. Following the course, professionals adopted a more patient-centred approach, used more open-ended questioning, displayed more empathy, responded more appropriately to patients’ cues, and used fewer leading questions. Furthermore, they also changed their attitudes and beliefs about the importance of communicating in this way which led to the transfer of these skills into clinics. This model of training has also been shown to have an enduring impact with maintenance of skills at 15 months post-training.

Nurses experience similar communication difficulties to those found in professionals and also complain about inadequate training. Few, just like the professionals involved in cancer care, have received much useful formal training in basic interviewing, assessment, and counselling skills. Some find their position even more stressful when patients are given conflicting information about the diagnosis by professionals in the care team. Research looking at the skills of hospice nurses revealed a disturbing level of blocking behaviours, especially when patients needed to talk about psychological concerns. Nurses also appear to benefit from further communication skills training courses in terms of improved attitudes, confidence, and skills. One interesting randomized study showed that post-training, nurses had more overt empathy with an increased use of emotionally focused communication.

Fear of provoking distress and handling difficult emotions

Breaking bad news and talking about advanced disease and death will invariably provoke some emotional response from patients and whoever else is present. Most HCPs fear extreme expression of emotion and tears although some report withdrawn, stunned silence as even more challenging. Some professionals assume that the nursing staff are more capable than they are in this type of situation and are therefore the best people to leave distressed patients and relatives with following a difficult interview. However, dealing with emotional reactions was perceived as the most difficult communication challenge for 46 per cent of senior oncology nurses. Learning how to manage the expression of emotion by others and in ourselves is of paramount importance if HCPs are to be honest but supportive bearers of bad news.

Containing one’s own emotions

Becoming emotionally close to patients is inevitable for many of us working within the so-called caring profession and has a cost. Worries about becoming upset ourselves often inhibit expression of ordinary kindness and compassion towards a distressed patient. It is not always wrong to display some emotion, in some situations it has been shown to be of value. Grieving parents just told about the death of a child appreciated those who looked moved or who shed a tear with them. Nevertheless, many professionals invest considerable energy cultivating a posture of cool detachment on the grounds that it represents the more professional type of response expected of professionals. Unfortunately, patients and relatives can view this detached attitude as evasive, cold, and unsympathetic, occurring at just the time that they are in much need of empathy and support. Whilst no one would be helped by an hysterical, weeping nurse or professional, I have yet to hear of a complaint that the professional looked too concerned and tearful, whereas reports of cold indifference are heard frequently.

Being blamed for failure, over-identification, and confronting one’s own death fears

In most Western cultures there is an inclination ‘to deny death altogether and celebrate new forms of technology designed to forestall death’. Not only lay populations but also professionals themselves often harbour quite unrealistic expectations about the therapeutic benefits of modern medicine, consequently anything other than cure can feel like failure. Some HCPs retreat from truthful disclosure if treatment has been less successful than was hoped; it is as though they still lived in ancient times when the bearer of the bad news that a battle had been lost would be executed. Younger, less-experienced professionals and nurses need opportunities to talk about these feelings in addition to being given training in how to deal with patients and families who react to bad news with anger and aggression, trying to find someone to blame.

Sometimes people who have difficulty accepting the inevitability of death engage in ‘doing something behaviours’. For a family, this might involve dragging the hapless patient around the world in a quest to find a miracle cure. Professionals may continue with a treatment regimen that has very little prospect of alleviating symptoms or enhancing survival. As fanciful as this might seem it is a phenomenon in which the patient becomes a kind of ‘talisman’ for the professional. It is a means of defying death by keeping people alive. These types of problems can influence the openness of communication in sometimes quite subtle ways and may be more obvious to an observer than to the professional. Hoping against hope that things might just have a better outcome is more likely when the professional identifies with the patient or the relatives. Awareness of how these issues influence and affect our communication is important.

Worldwide, most palliative care is provided by many different HCPs many of whom may not be palliative care specialists. Surgeons, medical and radiation oncologists, haematologists, chest physicians, dermatologists, and others will all see patients for whom curative treatment is not a realistic prospect, and many of these clinicians feel neither confident nor competent when communicating with patients seen as ‘therapeutic failures’. Sadly, unless the cure rates for most of the common solid tumours increases considerably, a majority of oncologists will spend the bulk of their clinical careers discussing palliation with patients and their families. Thus, knowing how to pace and tailor communication about difficult issues appropriately should be a prerequisite for anyone working in the field of cancer. But, in palliation, few find this an easy or even satisfying task.

As part of a randomized trial of a communication skills training, clinicians were asked to rate on a visual analogue scale, their satisfaction with their consultations immediately after patients had left the room. Mean satisfaction following 1039 palliative care consultations was significantly lower (P < 0.0001) than that following the 1768 consultations about active curative treatment or remission.

During previous communication skills courses, informing patients about the withdrawal of active, curative treatment and discussing palliation instead was seen as a major source of stress for senior clinicians in cancer medicine. Participants self-rated their confidence on a 10-cm visual analogue scale to items such as ‘telling patients that you are replacing active therapy with symptomatic care only’. Mean rating was 5.76 cm and low when compared with, for example, ‘telling patients they have a recurrence’ (6.62 cm) or ‘discussing side effects of treatment’ (7.28 cm). The professional’s unease is often picked up leading to further anxiety, distress, and feelings of abandonment by patients.

Effects of minimization or ambiguity

If professionals are uncomfortable with handling transitions, then they may minimize the significance of test results or the true therapeutic aims of treatment, thus denying patients opportunities to make plans and utilize whatever time is left. Examples of this captured on audiotape and videotape in our research include the following examples: a patient with multiple myeloma who had benefited from only a few months’ remission following high-dose chemotherapy, bone marrow transplantation, and maintenance interferon became very upset when told that tests confirmed relapse. In response to the patient’s manifest distress the professional said ‘there’s only a small amount of Bence Jones protein in your urine’, thus implying that things were not really too bad. We have also heard several professionals talking about ‘a few hot spots on bone scans’, the significance of which was lost on patients when interviewed by us later. At times, communication is so ambiguous, oblique, or incomplete that patients are ill-prepared for the future and adjustment is impaired. The following quotes reveal unfortunate examples of this. In the first a woman with metastatic breast cancer reported that her professional had said, ‘Take the tamoxifen, that’ll hold it … it’s quite simple to have your lung drained’. She then commented that they had talked of only ‘evidence of secondaries in the lung’, which she presumed meant that things were ‘hopefully not too bad’. She died 9 weeks after this interview from her lung metastases.

The next example shows the interaction between a professional and an elderly man with lung cancer before his expected third cycle of chemotherapy:

Professional: As you may remember when we first started this chemotherapy, we told you that we would check your blood and X-rays before each cycle. I have looked at your tests today and there are signs that things are progressing so we do not think that you should have any more chemotherapy.

Patient: Oh! So what happens now then?

Professional: Well, we just want you to come and see us if you develop any further problems with the breathing and we’ll treat those symptoms.

Patient: Right then, well thank you very much professional.

Immediately after this consultation, the patient was asked by a researcher what he remembered, he said, ‘well it’s good news really … the professional thinks things are progressing so I don’t need any more chemo and to just come back if my breathing starts up again … getting breathless you know’.

This scenario illustrates another problem to add to the difficulty that many have even discussing palliation, namely ambiguity. Words and phrases such as ‘things are progressing’ or ‘positive’ and ‘negative’ nodes have the opposite meanings when used in a lay rather than medical context. It is so important to check exactly what patients have understood before the consultation ends, as studies reveal that there are often major discrepancies between what professionals think they have said and what the patient has actually heard or understood. This calls into question the veracity of any consent given for treatment.

Consultations were tape-recorded in a report from Australia in which 118 patients with incurable cancer were seeing one of nine oncologists for a first consultation about their disease. Although the majority (84.7 per cent) were told about the aim of chemotherapy, 25.4 per cent were not explicitly told their cancer was incurable, and 42.4 per cent were not told their likely prognosis. Alternatives to embarking on anticancer therapy were only presented to 44.1 per cent, and only 36.4 per cent were told about side effects likely to impinge on quality of life. Choices about management were not offered to 69.3 per cent, and patient understanding was checked in only 10.2 per cent of consultations. Greater information disclosure was not related to anxiety but greater participation in decision-making was. It is interesting to speculate whether or not the decisional conflict and anxiety experienced by some patients was due to incomplete understanding about treatment. People cannot make decisions if they lack vital information about the available options.

Despite professionals’ genuine lack of awareness that sometimes they have seriously misled or confused patients, others admit to using misleading and euphemistic terminology and justify this with arguments that patients do not really want to know the truth when things are bad. The data regarding patient information preferences described earlier point to the fallacy of this position.

Professionals’ styles of communication

Whatever verbal communication takes place there is a necessity to ensure the congruency of this with any non-verbal messages. Facial expressions, manner, and tone of voice may reinforce or refute the intended meaning. How things are said is often as important as what is said. Professionals do have very different communication styles; some are helpful, others merely exacerbate their patients’ difficulties. Patients’ views about their professionals when discussing the transition from curative to palliative care were investigated in an interesting Swedish study. Six categories of professional were identified from a qualitative analysis of semi-structured interviews: the inexperienced messenger, the emotionally burdened, the rough and ready expert, the benevolent but tactless expert, the distanced professional, and the empathic professional. The patients stressed how much their ability to cope with the information depended on their relationship with the professional. As professionals acknowledge so many personal difficulties and barriers when communicating within this area, there is a clear need for improved training opportunities. Unless taught a patient-centred, biopsychosocial approach of relating to and talking with patients, professionals may be oblivious to the impact that their communication has on patients or feel helpless when trying to be appropriately supportive and to lessen the blow of bad news.

Discussing prognosis

We have already seen examples of less-than-honest disclosure, but problems for patients and their families are compounded further by professionals’ reluctance to prognosticate; they rarely initiate discussions about prognosis and are often evasive even if the patient is brave enough to ask. No one would deny that this is a tricky topic as many cancers do have uncertain outcomes making prediction difficult. One study investigated the responses of 968 physicians to the question ‘when a patient is labelled “terminal” approximately how many weeks should the patient have left to live?’. Answers ranged from 0–26 weeks with fewer than 1 per cent thinking that this was less than a week. The study also highlighted differences in estimates between primary care physicians and hospital professionals which could cause further confusion for a patient and their family trying to make decisions such as when to embark on hospice care. Professionals may feel so insecure and lacking in confidence when predicting how long someone might live that they try to avoid doing it at all. Failure to talk about such important issues arises for more complex reasons than mere uncertainty and inaccuracy about the likely course of the disease. Many studies have been reported in which professionals’ ability to predict survival of patients with cancer was examined. In one of the earliest, using a liberal interpretation of prediction accuracy, that is no more than twice and no less than half the actual duration of survival, 53 per cent of predictions were wrong. For the majority of these inaccuracies (90 per cent), the direction of error was for an optimistic rather than a pessimistic prediction, showing a propensity for overestimation rather than for underestimation of survival.

Many more recent publications have substantiated Parkes original studies showing that things have not changed much despite better diagnostic tools, so we need to look for other reasons for this. Over identification with patients can have negative effects and research also shows that the better the professional knows the patient in terms of the length and intensity of their contact, the more likely they are to overestimate survival. Professionals may need to hope against hope that things are better than they really are and this becomes more evident if the professional has built up a close relationship with the patient. This also provides a partial explanation as to why professionals may promote further toxic treatment regimens for patients that have very little prospect of benefit, rather than have an honest discussion about supportive care.

Extending further the arguments first expressed by Hippocrates, Lamont and Christakis have described how patients may unwittingly become ‘twice removed’ from the truth about their illness. Disclosure of prognosis is conceptualized as comprising two distinct elements, those of foreseeing and foretelling. Foreseeing can be defined as the unexpressed cognitive estimate or prediction that a professional may make about a patient’s likely survival, which we know is inclined to be optimistic. Foretelling is the communication about this with a patient which we know may be liable to conscious and accidental ambiguity or deliberate evasion. So the ‘twice removed patient’ can end up with a wildly inaccurate estimation of their likely survival and consequently are unable to prepare appropriately for the future. As a systematic review argued, unless professionals can predict accurately and communicate these predictions sensitively and accurately, patients and their families cannot make sensible and appropriate decisions about therapy, phase 1 trial participation or place of death.

Effect on patients of truth about prognosis

‘Rare are the cases where making or offering a carefully considered and framed prognosis results in choices that are harmful to the patient … As a result of a failure to prognosticate, let alone prognosticate accurately, patients may die deaths they deplore in locations they despise. They may seek noxious chemotherapy rather than good palliative care, enrol in clinical trials of experimental therapy that offer more benefit to the researchers than to themselves, or reassure loved ones that it is not yet time to pay a visit only to lapse into a coma before there is time to say goodbye.’

An argument is frequently made that most patients should not be told the truth about their prognosis as they will lose hope, become overwhelmed with an immobilizing depression, and not enjoy whatever time is left. Little hard evidence exists to support this position; in fact it is more likely that misguided evasion or frank dishonesty may add considerably to a patient’s distress and prolong the necessary adjustment process. If potentially distressing disclosures to patients are avoided then we give patients no opportunities to reveal their own fears and worries. This can leave them in anxiety-ridden isolation, convinced that the most unspeakably horrible fate awaits them. The uninformed patient may construct a scenario that bears little relationship to their likely demise.

Dealing with the misinformed patient

The palliative care team can find themselves dealing with a great deal of hostility and anger from patients and families who feel that they were never given honest information by HCPs involved earlier on in their care. They may feel that the choices and decisions that were made about therapeutic options were based on inaccurate or overoptimistic advice. The patient who feels very strongly that they were misled is unlikely to trust the new team members trying to offer reassurances about symptomatic care. Considerable investment in relationship-building skills is needed if the patient and relatives are going to develop the important degree of trust that will ease the physical and emotional pains that lie ahead. Discussion about why different outcomes to those hoped for have arisen is important and can sometimes be enough to correct some of the misunderstandings. However, familiarity with the official complaints procedure for the really angry person might be needed. Above all, recognition that the anger might be justified and that it may be the only way that some people have of expressing their distress and disappointment is required. Accurate documentation in hospital records about who said what to whom and when is obviously useful as are satisfactory communication channels with the multi-disciplinary team in order to provide feedback to others about what has happened and to perhaps avoid such situations in the future.

Anxiety and depression

Although avoidance of communication about advanced disease does not protect patients from experiencing considerable psychological distress, palliative care patients certainly do have significantly higher psychological morbidity than other patients with curable cancer. It is a sorry fact that much of this often goes unrecognized and therefore untreated. In the United Kingdom, 2850 patients were given the General Health Questionnaire (GHQ12) and 837 (36.4 per cent) had scores suggestive of psychological morbidity.

The 1046 palliative patients were more likely than other patients to have high GHQ scores (P < 0.0001). The ability of the clinicians to detect this probable morbidity was low overall but there were some interesting differences. The clinicians’ true positive (sensitivity) rates were higher for their palliative patients than for their other patients. Unfortunately, their specificity (true negative) rates were lower and misclassification rates greater. At least 408/1046 palliative patients were either thought to have significant psychological morbidity when they did not, or were thought to be psychologically well when they needed some extra help. One interpretation of these findings is that professionals nihilistically assume that people with incurable disease will be psychologically distressed. Professionals then lack the communication skills to determine how patients are coping. Unfortunately there was very little evidence of psychosocial probing during consultations which might permit more accurate assessment and referral on to appropriate support services.

Palliation should include treatment and amelioration of all symptoms including psychological ones. There is increasing evidence from well-conducted trials that psychosocial interventions are effective with adult cancer patients. Assuming that the institutions where patients are being treated have access to psychological services, it is vital that clinicians are trained in basic skills to determine which patients need help. Screening patients with validated questionnaires prior to seeing the professional might improve detection rates.

Communication needs of the family

The most important source of psychological and physical support for most patients is likely to be a family member. Encouraging a good therapeutic alliance with partners and carers is therefore vital. Many HCPs find communicating with dying or seriously ill patients less stressful than that with relatives who can appear threatening, obstructive, and hard to deal with. However, much of the difficulty can be managed or at least understood if one steps back a pace and considers the enormous strain and stress that carers have to shoulder. Some family members can look more ill and care-worn than their dying relative as a result of the increased pressures, new roles, and expectations placed upon them.

Most HCPs will at some stage have to cope with families who wish them to conceal the truth from their dying relative on the grounds that they would not be able to take it and would suffer unnecessarily. This is always hard to manage but families need help understanding that there is little or no convincing evidence supporting the contention that terminally ill patients who have not been told the truth of their situation die happily in blissful ignorance. A dying person witnesses their deteriorating body, fatigue, and reduction in ability to function.

Concealment of the truth is rarely achievable as relatives, friends, and HCPs find it hard not to give out non-verbal clues as to what is happening. The hollow cheerfulness and feigned optimism about quite unrealistic future goals are excruciating to witness, as are the anxious and stressed expressions on faces of people trying to maintain a lie. Particularly upsetting is watching families, who have not been gently helped to confront reality, locked into stilted discussions about trivia or frozen in silence. Facilitating opportunities for partners to discuss death with each other demands tact and skill and there may occasionally be exceptional circumstances where it might not be appropriate but these exceptions are rare. Collusion with relatives of dying patients in an attempt to sustain the myth of immortality is an abrogation of our responsibility to assist patients through the stages that might be needed for people to achieve a calm acceptance and more serene and dignified death. Additionally the inability to talk through death leaves much ‘unfinished business’ which relatives can bitterly regret later.

Just as families may wish to stop their loved ones from learning the sad fact that they are dying, occasionally patients themselves may ask that their relatives are not told the truth. This is a tricky situation as from an ethical standpoint, if conscious, the patient does have the right of confidentiality. Family dynamics can be hard to understand but the legal next of kin may not actually be the person from whom the patient has derived most support during their life. As well as ‘protecting’ relatives from the hurtful news of impending death, a desire to withhold this information can be the last defiant and punitive act left to a person. The only real suggestion that can be offered in such circumstances, although this is not based on any empirical evidence, is to try and find out why the patient feels so reluctant to share the knowledge about impending death with their relative. It might help to point out that a failure to reveal the truth and to discuss the subject with relatives might mean that the patient’s wishes about such things as funeral service, burial, or wishes about their estate and will are not handled appropriately. Also it might prevent reconciliation of old enmities. The services of a family therapist, social worker, or clinical psychologist might be invaluable.

Practical ways to help with information provision and communication

Assuming that HCPs accept the ethical imperative that they should at all times aim for supportive, honest disclosure, what other aids are there to assist patients and their families with the assimilation of difficult information?

Audiotapes

Many professionals provide cancer patients with tape-recordings of their consultations as an aid to improving recall and satisfaction. One group of researchers in the UK suggested that although audiotapes helped retention of information it did not reliably reduce psychological distress and could be unhelpful to some patients with a poor prognosis. Another RCT conducted in North America examined the efficacy of an audiotaped recording of the consultation with a palliative care team in addition to written information for 60 patients with advanced disease. The audiocassette with written information significantly improved overall satisfaction with the clinic and recall of information given during the consultation. Patients expressed a high level of satisfaction with the tape which was also valued by family members and friends.

Written material

Although verbal communication should be the primary method for transfer of information for patient education, written materials are useful adjuncts for some patients and their families. Patients can drown under a sea of paper, however, and may need guidance seeking out the most appropriate aids for them, in particular, information about reliable websites. Excellent materials in the form of booklets and leaflets are available from Cancerbackup in the United Kingdom and from their website. For individual HCPs and organizations wishing to produce more locally relevant informational aids, the Centre for Health Information Quality (CHQ) has a useful set of guides for developing readable information using a tool known as DISCERN. The King’s Fund in London also has an excellent guide called the practicalities of producing patient information (POPPI) developed with help from CHiQ and the Plain English Forum.

Prompt sheets

Some researchers have investigated the utility of prompt sheets for patients before they see the professional in an attempt to facilitate greater participation and asking of questions. There were concerns that this would merely increase the numbers of questions asked without necessarily helping patients to discuss those topics of most concern and relevance to them. In a carefully conducted series of studies Clayton et al. in Australia involved 19 patients, 24 carers, and 22 palliative care professionals in the design of a question prompt list (QPL). Interviews with participants identified 112 potential questions grouped under eight categories. After testing it was clear that patients and carers valued the QPL and that it reduced anxiety in 16/19 patients. Health-care professionals had been concerned about the inclusion of end-of-life issues but this topic was endorsed by the patients. A recent randomized trial of the QPL compared communication in 92 patients and carers given the QPL with 82 controls. Those in the intervention group asked significantly more questions in particular they asked for more prognostic information and about end-of-life issues. The group with the QPL had fewer unmet information needs about the future and about end-of-life issues than controls. Prompt sheets are a cheap and easy intervention in a palliative setting where patients and families may not know what to ask or be too frightened to do so.

Websites and experiences of other patients

Much confusion can be caused by unreliable websites providing information which is at best incorrect and worst downright harmful, especially dubious sources that exploit the neediness of desperate families with details about spurious, and usually expensive miracle cures. A notable exception in this confusing area is the innovative DIPEx group’s website (http//:www.healthtalkonline.org). They have produced a user-friendly, easy to navigate site which shows a variety of interviews providing personal accounts of other peoples’ experiences. The viewer can watch, listen to, or read these verbatims from individuals representing many different ages and backgrounds. The ‘Living with dying’ section contains 42 interviews with dying patients and carers. It also contains a host of other information including helpful tips about welfare benefits, community and palliative care, making wills, and talking to children.

It is worth checking with families if they have access to a computer and to help guide them to sites that offer sensible support and to monitor whether or not information on them is congruent with that given by the hospital or local palliative care team.

Conclusion

Honest communication is surely an ethical imperative for the truly caring clinician. Patients need to plan and make decisions about the place of their death, put their affairs in order, say goodbyes or forgive old adversaries, and be protected from embarking on futile therapies. All HCPs who work within an oncology or palliative care setting experience occasions when tough and distressing issues need to be discussed. Their behaviour and communication of caring and competence at this time have a major influence on the ability of patients and families to assimilate the news, consider options, and adapt and adjust to what lies ahead. Even if the news is gloomy the right touch, look, and supportive kind word always makes a difference. We know the effects that poor communication exerts but need to recognize that if patients are to receive optimal care then the training needs and emotional support required by HCPs cannot be ignored.

 

Multiple Choice Questions

1. Palliative Care is

A. Providing a space to die

B. Using a strong narcotic in patients who are at the end stage of life

C. Prevention and relief of suffering by means of early identification, impeccable assessment and treatment

D. Communicating well and praying together with family

 

2. Principles of palliative care are

A. Providing adequate analgesic, disease management, and place to die

B. Psychosocial care, symptom control, & disease management

C. Religious /spiritual support and psychosocial care

D. Disease management, intensive care & symptom control

 

3. This is an example of an open question

A. Your pain is better today, isn’t it?

B. How is your pain and how is your vomiting?

C. How are you feeling today?

D. You agree with what I say, don’t you?

 

4. Which of the below is an example of good communication skill

A. Interrupting

B. Changing the topics to physical concerns

C. Allowing silence

D. Looking away

 

5. Treatment decisions are to be made by

A. Patient alone

B. Professional alone

C. Patient empowered with information

D. Senior relatives and the professional

 

6. Breaking bad news in a seriously ill patient

A. Destroys hope completely

B. Hastens death

C. Fosters appropriate hope

D. Disturbs treatment plans

 

7. Palliative care begins when

A. Diagnosis of a chronic illness is made

B. When the patient is terminally ill

C. When disease is advanced and non responsive to curative treatment

D. Only when the patient cannot afford curative treatment

 

8.Denial

A. is a helpful coping mechanism

B. be never be broken

C. implies that the patient accepts the disease

D. is consequence of poor communication by the professional

 

9. Collusion is when a relative asks the professional not to reveal the diagnosis to the patient. Which statement below is true in this context?

a. Relative is insensitive

b. This will always help the patient to cope

c. Ideal way to improve chances of patient taking treatment

d. Will ultimately lead to distrust and distressing the patient

 

10. Which of the statements below is true with respect to spirituality

a. Implies a person’s religion

b. Has nothing to do with physical ailments

c. Discussing this issue is not permitted as it is a personal matter

d. Help the patient cope with illness and attempts must be made to discuss it with patient’s permission

True or False

1. Palliative care aims to prolong life in a patient with an incurable illness

2. Hospice Care means a building constructed to look after dying patients

3. Communication is mainly verbal

4. Withholding bad news from the patients helps him cope better

5. Silence is a means of communicating

6. Breaking bad news must be completed in a single interview

7. Every patient has to be told details of their diagnosis and prognosis

8. Spirituality and religion are different

9. Intractable symptoms could be an expression of spiritual distress

10. Communication skills come naturally to a person and cannot be taught

Short answer questions

1. Enumerate principles of palliative care

2. What is meant by rehabilitation in palliative care

3. Enumerate differences between caring for acutely and chronically ill patients

4. How is bad news to be conveyed? Enumerate steps?

5. What are anxiety disorders in palliative care?

6. Briefly discuss depressive disorders seen in palliative care patients?

7. Define distress? How do you screen for distress?

8. Define active listening? What are the components?

9. Enumerate the four cardinal principles of patient care?

10. Explain beneficence and maleficence with one example for each

 

1-What are the two communication goals in any interaction:

A-Task and relational

B-Relational and objective

C-Objective and empathy

D-Teaching and task

Answer: A

Rationale: Every interaction has two levels of meaning: the task level and the relational level. Task communication includes the content of the message and relational goals refer to the relationship between the two people as conveyed by the message.

 

2-Task communication involves which of the following:

A-Comforting the patient and family

B-Making the information provided by the clinician more clear for the

patient/family

C-Reporting the patient’s unique situation to the care team

D-B and C

Answer: D

Rationale: Task communication involves the content of the message and includes the “tasks” of communication, such as instructing, diagnosing, encouraging, supporting.

 

3-Task and relational communication must:

A-Be different from one another

B-Be the same as one another

C-Occur at different times

D-Complement one another

Answer: D

Rationale: Every interaction consists of two communication goals, task and relational communication. While the content level of a message is conveyed by the words themselves (task), the relational level generally is manifested by nonverbal communication.

 

4-In narrative practice, the clinician:

A-Identifies story structure and characters in the patient/family narrative

B-Adopts multiple perspectives

C-The nurse selects non-fiction for patient/family to read

D-A and B

Answer: D

Rationale: To engage in narrative clinical practice, the clinician engages in active listening by focusing on gaps, ambiguities, and conflicting plots within the patient/family’s story.

 

5-In narrative clinical practice, the clinician:

A-must accomplish pre-established goals of an interaction

B-tolerates uncertainty as they listen to a patient/family story

C-avoids information about a patient’s/family’s life

D-follows a script

Answer: B

Rationale: To engage in narrative clinical practice, the clinician acknowledges patient /family by listening to their story and being open to other’s judgments, beliefs, values, and actions. This allows the clinician to notice the vulnerability of patients/family members and to recognize their profound differences.

 

6-One of the three principals of bearing witness is to recognize the patient’s individuality. In order to do this, the clinician must _______________________.

A-Educate the patient/family

B-Confirm and explain medical news

C-Help the patient/family re-define care goals

D-Engage in deconstruction (active listening)

Answer: D

Rationale: Bearing witness involves “being with and relating to others” while at the same time honoring their voice, their lived experience. A special form of active listening called deconstruction, will help focus on gaps, ambiguities and conflicting plots within the story. This allows the nurse to notice the vulnerability of patients/family members and to recognize their profound difference.

 

7-The four dimensions in the Quality of Life Model do not include:

A-spiritual

B-mental

C-social

D-psychological

Answer: C

Rationale: The quality of life model consists of the spiritual, psychological, social, and physical well-being of the patient/family. Sorting the story’s content according to physical, social, spiritual, and/or psychological care will naturally help the clinician to identify specific assessments, resources, and additional involvement from interdisciplinary team members.

 

8- Person-centered messages accomplishes all of the following except

A-Recognizing and acknowledging patient/family feelings

B-Elaborating on the explanation of the patient/family feelings

C-Helps patient/family gain a new perspective on feelings

D-Instructs patients/families about their feelings

Answer: D

Rationale: Person-centered messages are one way to convey supportive communication. Communicating support allows the clinician to accomplish task and relational goals. Person-centered messages allow the clinician to recognize and acknowledge other’s feelings, elaborate on the explanation of the feelings, and help an individual gain a new perspective on feelings. When using person-centered messages, the clinician is able to present a holistic picture for the patient/family, clarify silence, and remind families of all that is being done to the patient.