Impact of witnessing death on hospice patients

Impact of witnessing death on hospice patients

Pergamon Soc. Sci. Med. Vol. 43, No. 12, pp. 1785-1794, 1996 S0277-9536(96)0007-79 Copyright © 1996 Elsevier Science Ltd Printed in Great Britain. ...

955KB Sizes 3 Downloads 89 Views

Pergamon

Soc. Sci. Med. Vol. 43, No. 12, pp. 1785-1794, 1996

S0277-9536(96)0007-79

Copyright © 1996 Elsevier Science Ltd Printed in Great Britain. All fights reserved 0277-9536/96 $15,00 + 0.00

IMPACT OF WITNESSING DEATH ON HOSPICE PATIENTS SHEILA PAYNE, ~ RICHARD HILLIER, 2 ALISON LANGLEY-EVANS ~ and TONY ROBERTS' 'Department of Psychology, University of Southampton, Murray Building, Salisbury Road, Southampton SO17 IBJ, U.K., zCountess Mountbatten House, Moorgreen Hospital, Botley Road, West End, Southampton SO30 3JB, U.K. Abstract--In the three decades since the concept of "awareness" was introduced to describe the nature of communication between dying people and their caters, there has been a radical change in hospital policies and medical practice. It is now common for the majority of cancer patients to be given full information about their disease and prognosis. Hospices provide a model of care in which death and dying are dealt with in an open manner. While this approach has been welcomed by the majority of people, a minority might still prefer a more limited awareness. An inevitable part of hospice care is the exposure to, and awareness of, people who are dying. There is little empirical data that considers the impact of death on fellow patients. This pilot investigation compared psychological morbidity, perceptions of comfort and/or distress, and descriptions of a "good death" in hospice cancer patients who reported witnessing a fellow patient's death (n = 34) with patients who did not have this experience (n = 33). Patients were assessed using the Hospital Anxiety and Depression scale, an Events Checklist and a semi-structnred interview. The results indicate that patients witnessing a death were significantly less depressed than those who did not. Awareness of dying was found to be both comforting and distressing, although overall patients reported more comforting than distressing events. A "good death" was defined by patients in terms of symptom conla'ol, including dying in their sleep, being pain free, quietness and dignity. Narratives were used to describe the meaning of a "good death". Quantitative and qualitative analyses have been undertaken to provide a complex interpretation of these issues. Copyright © 1996 Elsevier Science Ltd

Key words--palliative care, terminal care, communication, fellow patients, hospices

INTRODUCTION

dying person's status; " m i x e d " - - i n which some members of the dying person's social network knew of the The majority of people in Britain die in institutions, prognosis but others (which may include the patient) usually in hospitals. It is estimated that 54% of deaths do not; and " c l o s e d " - - i n which an attempt was occur in hospitals, 13% in nursing or residential homes and only 4% in hospices [1]. In 1993, approximately made, either by the medical staff or the patient's 28,000 deaths occurred in hospices, predominantly family, to keep the prognosis unknown. Thus the staff, from cancer, and almost 100,000 patients received families and patients may collude to avoid talking home care by palliative care nurses [2]. In January about dying, ostensibly to protect others. It has been 1994, there were 203 in-patient palliative care units in argued that "closed" and "mixed" awareness contexts are psychologically damaging to patients and Britain and Ireland. There have been considerable developments in their families [7] by preventing normal psychological specialist palliative care services for the terminally ill, processes associated with loss, such as anticipatory although there remain some concerns about unmet grief, from occurring. However, these studies were conducted over 30 needs [3]. Previous research conducted in general hospitals indicates that dying patients were often both years ago and may not represent the experiences of physically isolated by being cared for in side rooms dying people today. The hospice movement has develand had only limited communication about their con- oped rapidly in the last two decades [8]. It seeks to provide an alternative model of care in which death dition [4]. A number of studies have investigated death and and dying are dealt with in an open manner. This has dying as a social event in hospital [5], [6]. Sudnow occurred concurrently with wider changes in society suggested that dying is routinized and thereby becomes that have removed some of the taboo surrounding part of the day-to-day functioning of the hospital as an death and produced a greater willingness by doctors to organization. Glaser and Strauss [5] described a range talk honestly with patients [9]. While this approach of awareness contexts in which patients, staff, families has been welcomed by the majority of people, a minand friends may engage, in relation to the discussion ority may still prefer a more limited awareness. The concept of open "awareness" is central to hosof the terminal nature of the patient's condition. They proposed three major categories of awareness: pice philosophy, but it remains problematic. Early hos" o p e n " - - i n which all participants acknowledged the pice workers advocated that dying should be 5514 43I I~'-I:

1785

1786

Sheila Payne et al.

conducted "openly", in that dying patients should be cared for collectively in separate institutions or designated areas [10]. Awareness contexts are not synonymous with cancer-related deaths but are associated with anticipated terminal disease trajectories. It has been proposed by Coleman [ 11 ] that ageing alone does not influence an individual's sense of self-integrity and attitudes to death, although he argues that physical and psychological frailty does. An inevitable part of hospice care is the exposure to, and awareness of, people who are dying. Most research tends to be from the perspective of relatives or those caring for the dying rather than from patients and their perceptions [9]. Research on doctors and nurses indicates that interacting with and caring for dying patients is often perceived as a very stressful part of their role [12]. Likewise, relatives of the dying are often critical of their hospital experiences [13]. However, there is little empirical research that considers the impact of death on fellow patients. It is possible to speculate that such experiences may be distressing, as they might remind the observing patients of their own imminent death. Alternatively, patients may be comforted by observing the care and attention afforded to the dying person. Such assumptions have been explored by Honeybun et al. [14] in a very small study of 20 hospice patients. They reported that the 11 patients who had witnessed a death were less depressed and more reassured by the experience than the nine patients who had not witnessed a death. However, an important aspect not considered was the nature of the observed death. In addition, patients develop relationships of varying intensity with their fellow patients, and this may be expected to influence the perception of these deaths. It is clear that patients have prior expectations of the dying process and the nature of a "good" death [15]. Moreover, Hunt's work indicates that nurses are instrumental in conveying their views about what constitutes a "good" death and what are appropriate "dying" behaviours. With improvements in palliative medicine and nursing care it is possible that the dying phase of diseases such as cancer may be prolonged. Thus, health services should be mindful that in prolonging physical survival nothing is done to increase psychological distress. Individuals should be given some freedom to shape the dying roles that they wish for, based on their social, spiritual and cultural expectations [16]. It is important that we know to what extent health care professionals are aware of these individual differences. A recent British report [17] emphasized the need for good models of cultural and ethnically sensitive practice in the care of the dying to be developed and communicated to health professionals working with dying patients in the community and general hospitals. Thus, the purpose of this study was twofold: •

to assess the impact of death on fellow patients in terms of levels of anxiety and depression and perceived distress and/or reassurance; and



to elicit patients' awareness of their own impending death. METHOD

The research context

The research was conducted in a 25-bedded palliative care unit located in the South of England. This hospice provides in-patient care for cancer patients who are usually accommodated in four-bedded bays. Statistics for the last 14 years indicate a large increase in the referrals to the hospice from 616 in 1981, to 1261 in 1994. While the death rate shows annual fluctuations, overall it remains fairly constant with a mean of 315 in-patient deaths (ranging from 287 in 1991 to 365 in 1987). It appears that the major increase in workload can be accounted for in the rise in discharges. This probably results from improvements in symptom control and better community care facilities. It also means that potentially more patients may witness the death of fellow patients whilst they are inpatients. Patient recruitment

One hundred patients were invited to take part in the study. Between 16 May and 22 September 1994 there were 237 in-patient admissions. Eighty of the patients were deemed "fit" to participate. The exclusion criteria were: • • •

the mentally confused; those unable to express themselves; and those too unwell to complete data collection.

Patients admitted on more than one occasion were only invited to participate on the first occasion. Thus, during these four months only 35% of all patients admitted were deemed able to participate. These patients were approached by the research assistant six to seven days after their admission to the hospice. A delay in recruitment was desirable to both stabilize their medical condition and increase the likelihood that they would have witnessed a death. Patients were informed (verbally and in writing) of their rights to refuse participation, which it was explained would be without detriment to their medical and nursing care. They were usually given 24 hours or longer to make their decision. During October 1994, a further 20 patients were invited to participate by the same research assistant, using the same criteria. Sixty-nine of the 100 patients approached agreed to take part in the study. This represents a refusal rate of 31%. Although this is a higher rate than we would have wished, we consider that it can be accounted for by the advanced state of their disease. Moreover, we were careful not to place the patients under any pressure to participate. We noted a trend for refusal rates to increase during times of higher mortality. A further

Impact of witnessing death on hospice patients

1787

two patients became unwell during data collection, and their responses were excluded from the subsequent analyses. The results are based on the 67 patients who completed the three elements of the data collection phase. Careful records of the timing and location of all deaths were kept, This information allowed verification between patients' reports of perceived and actual witnessing of deaths. Three patients had not actually witnessed a death in their bay but were aware of those deaths occurring nearby, and two patients chose to be "unaware" of the deaths that occurred in the next bed. Patients were allocated into two groups depending upon whether they reported witnessing or not witnessing the death of a fellow patient: 34 witnessed a death and 33 did not.

distress and/or reassurance were assessed by the following measures. First, the Hospital Anxiety and Depression scale (HAD) was used [21]. This scale is a 14-item questionnaire divided into two subscales for anxiety and depression. Patients rate each item on a 4-point descriptive scale. Standard cut-off criteria were used: scores of 0-7 were taken to be indicative of no pathology, 8-10 a borderline case, and 11-21 a probable case. The HAD scale is acceptable to patients, and by excluding somatic items it minimizes the likelihood of confounding disease-related symptoms and psychological aspects. This measure has been widely used with cancer patients and has proved to be valid and reliable [22], [23], although Silverstone [24] has found that the scale has poor predictive ability in the diagnosis of major depressive disorders in general medical and psychiatric Ethical issues patients. It has been suggested that the HAD scale Research conducted with dying patients must be is only used as a clinical indicator of depressive dismindful of the ethical issues [18]. It has been argued order rather than as a diagnostic tool [24]. The that any research conducted with dying patients is HAD scale has been successfully used with dying morally unjustifiable [19], although such an extreme patients [25], although there are concerns that social stance has been vigorously attacked on the grounds withdrawal and anhedonia might be representative of that it is "paternalistic, devaluing and disrespectful" normal processes of dying rather than features of the not to provide an opportunity for patients to share their "pathological" condition of depression. We were experiences if they wished to [20]. In our study, we aware that one item in the depression subscale--"I were concerned not to increase the burden or distress feel as if I am slowed down"mwas potentially conof patients. In addition to obtaining Hospital Ethical founded by physical status in advanced disease. Committee permission, the study design and conduct Next, an Events Checklist was adapted with the were carefully monitored with ethical issues in mind. authors' permission from that used with hospice We recruited a research assistant who was both a quapatients by Honeybun et al. [14]. It described 11 polified nurse and a psychology graduate (A. L.-E.), and tentially distressing and nine potentially comforting she had recent clinical experience in interacting with events, which patients rated on a 5-point scale, ranging elderly patients. She spent a week becoming familiar from 0 = not at all comforting/distressing to with the routine organization of the hospice. Once the 4=extremely comforting/distressing. The order of data collection started, she introduced herself to all presentation was randomized to reduce response bias. patients fairly soon after their admission so that they Third, a short interview based on that previously were aware of who she was and that a research study used by Honeybun et al. [14] was developed. It conwas being conducted in the hospice. The relatively rained two open questions about distressing and comhigh refusal rate indicates that patients were not pressforting events that had occurred since admission. ured to take part. Finally, we believe that most of Patients were also asked an open-ended question to elithose patients who chose to participate gained from the cit their perceptions of a "good" death. experience. Patients appeared pleased to have someone Finally, socio-demographic and clinical data were to share their perspective with. None asked to termiobtained from medical records. nate the interview. While the expression of sadness or The procedure for collecting data were as follows: distress was not uncommon during the interview, none the study was explained, informed consent was were left distressed at the end, and many shared feelobtained, the interview was started, the HAD scale ings of happiness or humour as well. Thus, we conwas administered either verbally or in writing and was clude that while it is generally ethically defensible to completed by the patients themselves, the interview conduct research with dying patients, as it is important continued, the Checklists were given, the interview to gain an understanding of their needs and views, was concluded and the patient thanked. Responses there remain specific circumstances where it is not during the interviews were audio tape recorded with ethically defensible, for example, during episodes of the patients' permission. All interviews were tranacute physical illness or emotional distress. scribed. Method of patient assessment

All patients were interviewed once by the same research assistant who came to their bedside or other private area. Psychological morbidity and perceived

RESULTS Both quantitative and qualitative data analyses were undertaken. The former are presented first.

1788

Sheila Payne er al.

Patient characteristics The patient sample consisted of 34 males and 33 females, with significantly more men (26) than women (8) reporting witnessing a death (~2=9.60, df= 1, P<0.001). The mean age of the total sample was 66.5 years (SD= 12.8, range 18-84 years). Men were significantly older (mean age = 70.48 years, SD = 7.99) than women (mean age ffi 63.55 years, SD = 15.02) (unpaired t = 2.25, df= 65, P<0.02). The mean age of the "witnessed death" group was 68.2 years (SD= 11.7, range 18-84) and the "not witnessed death" group 64.7 years (SD= 13.9, range 30-84), which was not significantly different (t -- 1.10, df= 65, P = 0 . 2 7 ) . Thirty-three patients were married, 21 widowed, eight divorced and five single. The majority (43) were admitted from home to the hospice. They had a range of common cancers, including lung (11), breast (11), prostate (9), colo-rectal (7), upper gastrointestinal (7) and others (22). Comparison of diagnoses between the groups revealed no marked differences, other than in prostate cancer where all except one patient was in the "witnessed" group. Overall, length of illness was very variable, although the largest number of patients had been ill for less than one year. Of the 31 patients who refused to partici~ate, there were 15 males and 16 females whose mean age was a little older, 69.41 years (range 36-92 years), than those who took part, but this was not statistically different (t= 1.07, d f = 9 5 , P = 0 . 2 8 ) . The majority were married (16), with 10 widowed, four divorced and one single person. The majority had been admitted from home (20), and they had a similar pattern of diagnoses. There appeared to be no major differences in socio-demographic variables in those patients who agreed to participate and those who did not.

Psychological morbidity We hypothesized from the findings of Honeybun et al. [14] that patients who had witnessed a death would be less depressed than those who had not witnessed a death. This was supported by the data which indicated that the mean depression score for the witness group (n = 34) was 6.70 (SD = 3.9), and for the non-witness group (n = 33) the mean depression score was 9.36 (SD = 4.12). This was a statistically significant difference (unpaired t = - 2 . 6 8 , df=65, P < 0 . 0 1 ) . No prediction about the relationship of anxiety to awareness of death in others was made. There was no significant difference in mean levels of anxiety between the groups; the witness group mean was 5.35 (SD = 4.0) and the non-witness group mean was 6.27 (SD = 4.47) (unpaired t = - 0.88, df= 65, P = 0.37). Overall mean levels of psychological morbidity were in the normal range (0-7), except for the nonwitness group mean depression score, which was in the "borderline" category (8-10). However, it is important to recognize that certain individuals were scor-

25 20 15 10 5 0

Witness

Non-Witness

Fig. 1. Depression scores from the HAD scale.

ing in the probable psychiatric "case" range (11-21) in both groups as shown in Fig. 1 and Fig. 2. A series of further analyses was undertaken to determine whether anxiety and depression were associated with other variables. There were no gender differences in mean scores of depression ( t = - 0 . 3 1 , df=65, P = 0.75) or of anxiety (t = 0.32, df= 65, P = 0.74). Neither depression (r=0.03) nor anxiety ( r = - 0 . 1 9 ) were correlated to any extent with age. In fact, anxiety scores showed a very slight negative correlation with increasing age. Likewise, duration of illness since primary diagnosis was not correlated with any of the variables measured.

Comforting and distressing events checklists All patients were presented with the Events Checklists. It was possible that the order in which patients were presented with lists of comforting or distressing events might bias their subsequent responses. However, since no order effects were found during preliminary analyses, the reported analyses are based on the total sample divided into groups on their reports of witnessing a death or not. Overall, participants were more likely to rate events as quite or very comforting than quite or very distressing. Tables 1 and 2 show the mean responses from the witness and non-witness groups. Patients who had witnessed a death were more likely to rate "having visitors" as very comforting than those in the other group (u -- 379.5, P < 0.03). Overall, patients rated most of the distressing events as merely slightly distressing with the exception of Item 5 "place being dirty". Patients in the non-witness • 30

Non-Case 0-7

[ ] Borderline 8-10

25 20 15 I0 5 0

Non-Case 0-7

Borderline 8-10

Fig. 2. Anxiety scores from the HAD scale.

Impact of witnessingdeath on hospice patients Table 1. Mean ratings of comforting events by awareness of death group

I. Nurses having plenty of time 2. Signs of disease getting better 3. Having visitors 4. Seeing the vicar 5. Someone in my room dying peacefully 6. Doctors being friendly 7. Having physiotherapy 8. Atmosphere of warmth and security 9. Being able to have drugs on demand

Witness (n = 34) 3.26 2.75 3.33 2.33

Not witness (n = 33) 2.96 2.4 2.84 a 2.19

1.88 3.14 2.77

n/a 3.07 1.88

3.20

3.00

3.18

3.23

ap
group were more likely to find "seeing distressed relatives" as quite or very distressing than those in the other group (u=61, P<0.008). Content analyses of the semi-structured interviews The interviews were designed to elicit the respondents' own perceptions of their experiences. Spontaneously reported comforting and distressing events were identified by the research assistant. These were then judged independently and agreement was reached in over 90% of cases. This served to verify events presented in the Events Checklist and provided an opportunity for patients to comment on other salient concerns. Overall, patients spontaneously reported more comforting (107) than distressing experiences (58), both in terms of discrete events and in the number of respondents describing particular episodes, as shown in Tables 3 and 4. The majority of patients 42 (62%) perceived the attitude of staff to be helpful, There were also a number of categories that related to non-clinical aspects of care (having visitors, relationships with other patients, non-clinical services) which Table 2. Mean ratings of distressing events by awareness of death group Witness (n - 34)

Not witness (n ---33)

I. People disturbing me 2. Having frequent enemas 3. Having to lie in bed 4. Getting weaker in myself 5. Place being dirty 6. Nurses being impatient 7. Someone dying in my room 8. Losing my belongings 9. Not being able to get to the

1.26 1.50 1.22 1.83 3.00 1.50 1.08 1.16

1.44 1.58 1.65 2,25 1.00 n/a n/a 0.33

shops

2.00 1.43 1.45

1.33 1.85 2.66 a

10. Not being able to sleep 11. Seeing distressed relatives

aP<0.01. n/a: not answered. Key to ratings: 0--not at all distressing; l--slightly distressing; 2--quite distressing; 3--very distressing; 4---extremely distressing. Source: Mann-Whitney University.

1789

were clearly perceived to be comforting. The most commonly reported distressing event, mentioned by 20 (30%) patients, was an awareness of somebody dying. Perhaps not surprisingly, it was mentioned in the interview most frequently by patients in the witness group--17 finding it distressing and three comforting, although three patients who had not witnessed a death described somebody dying as distressing and a single person as comforting. Awareness of another patient dying was therefore paradoxically perceived to be both comforting and distressing. More detailed analysis revealed that the key comforting factors were: •



a peaceful death may be reassuring, as the death event was seen as less traumatic than expected; and witnessing the care and attention given to dying patients may be reassuring because patients believe that they will not be neglected when they themselves die.

In comparison, the key distressing factors identified were: • •

a noisy or agitated dying patient; and a death, however peaceful, being inherently sad.

It was also found that the presence of other patients, especially witnessing emotional distress or unpleasant symptoms in others, was perceived to be distressing. It is possible that the presence of other patients and their relatives results in considerable ambiguity as they may be both a source of comfort and distress. For some patients it may not be witnessing a patient dying that causes concern. Two patients mentioned their upset at having to carry on their daily activities while there was a dead body behind the curtains in the next bed. We observed some bodies being left for up to three hours whilst nurses waited for relatives to arrive to view the body before they were removed to a room for laying out. Patients' awareness of their own impending death A qualitative analysis was undertaken to focus on the second aim of the study: patients' awareness of their own impending death. Three aspects of the semistructured interviews were analysed in depth: "awareness" of their diagnosis, the future, and a "good" death. All the comments on these three themes identified in the transcripts were abstracted. Categories were derived from careful reading of the interview transcripts, during which all references to comforting or distressing events were highlighted. Using a constant comparative method, clusters of similar events were defined and labelled [26]. The following quotes are not intended to imply typical responses but to demonstrate the range of responses elicited. Awareness Patients were asked the question: "What have the doctors told you about your illness?" The hospice has

Sheila Payne et al.

1790

Table 3. Summary of spontaneouslyreported comfortingevents identifiedduring intecviews Comforting events

Total

(n = 34)

Number of patients reporting Not witness (n = 33)

22 9 8 3 6 3 3 4 2 4 64

20 3 3 7 1 2 1 0 1 5 43

42 12 l1 10 7 5 4 4 3 9 107

Witness Staff attitude perceived as beneficial Having visitors Peer group---otherpatients Non-clinical facilities Atmosphere of unit Clergy Somebody dying Symptom control Admission and discharge Other Total

an official " o p e n awareness" policy, in which patients are fully informed of their diagnosis and the palliative nature of their current treatment, should they wish to know. However, it is acknowledged that what doctors may have told patients and what they acquire from other sources, such as nurses or other patients, may not be the same thing. Thus, in this section we sought to identify the broader concept of awareness generally. From the interview transcripts, a complete range of " a w a r e n e s s " of cancer was identified. Some patients provided detailed descriptions of their disease and its treatment. They appeared to be fully informed and realistic in their expectations about their prognosis. The following patient is an example.

At the other extreme, there were patients who were " u n a w a r e " . In our analysis we tried to differentiate between those who claimed to know " n o t h i n g " (n=12) and those who wished " n o t to k n o w " (n=5). Undoubtedly, these categories overlap. We were also concerned not to pressure people into speaking about issues that they chose to ignore. An example of a patient who knows " n o t h i n g " is given below. P: No, I haven't seen a doctor. I: What do you know of your illness? P: I don't know anything. I: Nothing? P: No. No, I don't know a thing. I don't know what's wrong, I don't know why I came in. (female, pancreas) In comparison, patients who referred indirectly or made implicit comments about their cancer may be regarded as choosing " n o t to k n o w " .

Patient (P): Oh, I know everything completely. I know everything completely about what's wrong with me. Interviewer (I): Right. P: So, I know that first of all it started off with cancer of the prostate. I had the operation and that wouldn't cure the cancer, but it would slow it down 95%. But I left it a very long time. My wife kept telling me to go and get my prostate seen to, and I kept putting it off. I put it off for t w o years thinking it was just ordinary prostate, but it turned out it wasn't. So by that time--in--that two years, all me--all the bones in the pelvic area, including the spine and different parts of the spine, the base of me skull, I've got some up there. I've got secondaries. [He goes on to describe his treatment.] (male, prostate cancer)

I don't ask a lot of questions, I don't want to know answers about that. So, err, that's all. Yeh. (female, breast) Well, I say they've not told me a great deal. But it's probably that I haven't been listening. I'm rather like that, I get, I g e t shut off from things and then of course I don't pick up... (female, piriform fossa) While the previous patients may be thought of as being on a continum of awareness from " o p e n " to " c l o s e d " , others are best described in terms of how they give meaning to their experiences. Two types of "limited awareness" were identified from the transcripts; one in which patients explained their reasons for being in the hospice in terms of a condition other than cancer, and another in which emphasis was placed on particular symptoms. This does not imply that patients were not aware of their cancer but that at the time of the interview, their most salient concerns were

This patient's level of knowledge and detailed description was unusual; more typical were responses that indicated full knowledge but were not so explicit. They tell me about what's current, but I was told about my illness before I came here, and that's all I can say really, but they're never backward in telling me anything about it. (male, brain)

Table 4. Summary of spontaneouslyreported distressingevents identifiedduring interviews Distressingevents

Total

(n = 34)

Number of patients reporting Not witness (n = 33)

17 6 2 3 1 3 1 34

3 5 5 2 3 0 6 24

20 II 7 5 4 3 7 58

Witness Somebody dying Other patients Physical symptoms Admission and discharge Family interaction Staff problems Other Totals

Impact of witnessing death on hospice patients related to concurrent pathology or processes such as ageing. Hospice workers have long acknowledged the concept of "total pain" that results from more than just the cancer. Well, they said that, not these doctors, that apparently I had a gast/'ie ulcer or something and that had got cancer cells in and all. I had a big stomach operation and I don't think they removed it all, sort of thing, so where we go from here I don't know. And my chief complaint is asthmatical. (male, stomach) That I've got diabetes. (male, lung) Err, well I don't know, it's just old age I should think. You know, I am getting past doing things for myself. (female, ovary) Other patients, while acknowledging their cancer, tended to focus attention on immediate concerns. Nothing much about my illness because I'm only here for a rest really. Nothing has developed in my illness recently. My only problem I've had since I've been here is my upset stomach. (male, myeloma) Patients appeared to be able to control their levels of awareness in ways that were tolerable for them, In the course of an interview, some patients indicated different levels of awareness at different stages. Thus, we would propose the "awareness" should not be viewed as a stable attribute. Future Patients were asked the question: "How do you see your future?" There appeared to be two major dimensions along which responses were distributed. One dimension was the perceived length of future that they had and their feelings about that, and the other concerned goals or anticipated activities and events. The first dimension (the perceived length of their future) produced a cluster of responses (n = 7) at one extreme that indicated that the person perceived themselves to have no future. Well basically, what they've told me is that I haven't got one! Other patients reported not thinking about the future (n = 4), not looking at the future (n = 2), or not knowing about the future (n = 2). I don't think about the future any more because it's so uncertain. Don't know if I have got one. I don't know how long it is...and until I do I don't plan, I just get on with it and I do what I do while I can do it, and when I can't, I rest. That's all I can do. Another group of responses may be thought of as being further along the continuum. These patients acknowledged that they might not have long to live (n = 2) and emphasized the importance of living "dayto-day" (n = 4). Well, take it steady, day by day. That's all I've got to do really, and try to do little things what I want to do. At the furthest extreme of this dimension, three patients spoke about "getting better" and two of enjoying life.

1791

P: Well, sometimes I think I'm going to get better and I'll be okay. I: What about other times? P: I don't even think of that. The alternative dimension (goals or anticipated activities) ranged from explicit references to death (n = 5) as a frequently anticipate event, to other, not necessarily incompatible goals such as returning home (n = 6) and other activities (n = 4). Only one patient explicitly mentioned being in favour of euthanasia. I should like them to bring in euthanasia. If you gets pain then you can do away with yourself. Most references to their own death indicated resignation and a lack of fear. The following is an example: Oh, I think my future is that, quite definitely, probably within the next six months I will die. That's my future but it doesn't bother me. I can, I know it, I'm not mad, and I'm not stupid, but I really feel that within a year without any doubt, but it doesn't bother me in the least, you see. Don't know why I feel like this but I do. I didn't know I'd have the strength to go on like this but it doesn't bother me at all. Other patients concentrated on achieving specific goals. The most commonly mentioned one was "going home". Four other goals were identified: driving the car, gardening, playing bridge and going shopping. Well, I'm doing something about it at the moment by..Tm going to go home shortly, I'm working towards it with the physio, I did this, I went home before and there were...attempts to get me mobile to a certain level...I enjoy going home. That's why I'm keen to go again, even if it means being mobile in a chair, slightly different, but not impossible. The most distressing aspect of the future for three people was their perception of the consequences of their death for relations. Some patients reflected on how their death might sadden their spouse or family.

"Good death" In those patients who explicitly mentioned the word "death", or made explicit reference to dying, we asked the question: "Have you an idea of what wouM make a good death?" To comply with Hospital Ethical Committee guidelines, it was decided not to ask this question of all patients as we wished to respect their right not to dwell on the topic of death if they did not wish to be " a w a r e " . The most commonly (n = 6) identified characteristic of a good death was to die in one's sleep. Just go to sleep and not wake up any more. Patients also defined "good deaths" as being quiet, peaceful, dignified and pain-free. Quietly in my sleep. I do pray sometimes that I would go, when I'm in pain, you know, and then I think how awful it's going to be for my family, you know, 'cause we are very close. Opinions were divided on whether it was better to have warning of impending death or whether a sudden death was preferable. A small group of patients found the subject inappropriate to talk or think about.

Sbeila Payne et al.

1792

I don't know, I haven't thought about it. I've never wanted to talk about it. Relatively few people made explicit references to religion or spiritual beliefs in response to our question, although those that did clearly found their belief systems to be helpful. It was more common for people to mention their acceptance of death and their lack of fear, and one person spoke of being reunited with his spouse. I have to be with the Lord. I've always believed in God. You just go peaceful. Interestingly, a "good death" was rarely described as an abstract phenomenon. Patients generally provided us with descriptions of actual "good" deaths and less frequently "bad" deaths which they had witnessed. These were often the deaths of family members whom they had cared for. These were often detailed narratives, during which our respondents highlighted aspects of a "good" death. Well, I always said I'd like to die like my second husband. He just simply dropped dead one day. He'd been on the sick list, but he simply just dropped dead. He'd been mowing the lawn out in the garden. Now my first husband, I watched die slowly of cancer, so I know which I would chose. I always prayed that when I die it would be...I think most people would. Nobody would wish to linger on. But having said that, I don't think I'd go so far as to try and assist, assist in any way. Your time is your time. Patients also engaged in social comparisons between themselves and other patients, which indicates the importance of their perceptions of other patients, such as the following example. Without pain. Yes, what more can I say, I don't know. Like the guy opposite and went to sleep one night and forgot to wake up. In summary, a "good death" was defined not only as a list of features that included sleep, freedom from pain, quietness and dignity, but as narratives of actual deaths that were contextualized within their life.

DISCUSSION

The results of this study have provided evidence that patients are aware of their fellow patients in a palliative care unit but that "awareness" of their own and others' deaths may best be thought of as a process rather than as a stable attribute. Our findings support the hypothesis that patients who report witnessing the death of fellow patients are significantly less depressed than those who do not. Thus, this study replicates the findings of Honeybun et al. [14] in a larger sample and in a different institution. It is important to recognize that admitting patients to an in-patient palliative care unit, where they may be exposed to other dying patients, does not increase psychological morbidity. In fact, it may be construed as being helpful for patients to witness the care and attention afforded to others. This study is limited in several respects. In sampfing only one palliative care unit, we are cautious in gener-

alizing these findings. As the study design was crosssectional, we are unable to draw conclusions about the direction of causality. Moreover, although we have argued that "awareness" may be a dynamic rather than static attribute, this is based on changes occurring during the course of a single interview. A series of interviews would provide more convincing evidence such as the methodology employed by Hinton [27]. The sample size, although larger than that reported by Honeybun et al. [14], must be regarded as relatively small. The refusal rate of 31% means that there may be an important subgroup that we know little about. The use of standardized measures and checHists can go only so far in providing an understanding of the experience of patients. We wished to provide patients with an opportunity to express their salient concerns in the context of a semi-structured interview. Thus, we would argue that the qualitative analysis goes some way to enable patients to voice their experiences, although we acknowledge the power relationships that are inherent during interviews and the process of selection and reconstruction that are required during analysis [28]. Psychological morbidity in our sample was largely accounted for by depression, rather than anxiety, unlike data collected from breast cancer patients in the early stages of treatment where anxiety is more common. A point prevalence of psychiatric disorder of 48% at six weeks and 17% at 20 weeks post-diagnosis of breast cancer has been reported [29]. This indicates much higher initial levels than in the terminally ill where we found 10.4% (7/67) had probable case levels of anxiety and 16.4% (I 1/67) had probable case levels of depression. There is some discussion as to whether the social withdrawal, reduced engagement with others, and lack of enjoyment of usual activities, which are characteristic of people dying of cancer, are indicative of clinical depression [30]. It could be argued that these are normal aspects of the process of dying. We found that two items on the HAD scale were probably confounded with physical deterioration. They were: "I feel slowed down" and "I still enjoy the activities that I use to enjoy". We suggest that other investigators may wish to remove these items or investigate an alternative measure of depression for these types of patients. More male patients than female patients reported witnessing a death. It is known that men are less likely to report psychological and physical symptoms [31], [32]. However, this systematic bias is unlikely to account for our results because we found no statistically significant gender differences in depression scores. In addition, increasing age or the duration of the illness were not correlated with the levels of depression recorded. In offering an explanation for these findings, we wish to propose that patients may systematically vary in their social orientation to, and engagement with, other people. The evidence for this proposal is in the differences in responses to the Events Checklist, where

Impact of witnessingdeath on hospice patients

1793

patients in the witness group were significantly more are a good methodological tool for investigating these comforted by having visitors while the non-witness issues. group were significantly more distressed by seeing disBearing in mind the caveats about the methodologitressed relatives. It could be argued that patients who cal limitations of this study, the results seem largely to did not witness a death were less socially orientated to support the view that while, paradoxically, awareness events in the hospice and that they found it more diffi- of dying is reported by patients as both comforting and cult to cope with other patients and their relatives. distressing, patients who report witnessing the deaths Overall, patients in the witness group reported both of fellow patients were less depressed than those who more comforting and distressing events. This suggests do not. "Awareness" is a central tenet of hospice philthat they were more aware of, or more willing to talk osophy, yet remains problematic. There is an assumpabout, what was happening around them, both "good" tion that "open awareness" is a good thing and that and "bad" events. An alternative explanation is that the attainment of this goal should guide the provision they were less ill or less heavily sedated. The focus of of care and style of communication in palliative care. research has been on death as an event, rather than the It is unknown to what extent patients may have a prisocial processes that occur in the period preceding and vate awareness that is not manifest in public stateimmediately following a death that are likely to ments or discussions with staff and/or family. The involve a number of interactants, namely, the patients, accounts provided by patients during this investigation their relatives and friends, and staff. It is possible that suggest that further research would be timely and vicarious suffering is endured by some patients who worthwhile. witness the distress of others' loved ones. Future investigators may wish to explore these possibilities. Acknowledgements--We would like to thank the patients and Awareness of others dying was found to be both staff at the hospice, who generouslygave their time to particicomforting and distressing. Interaction with other pate in this study. This study was funded by the Wessex Regional Health Authority. patients may be ambiguous. Patients may choose to maintain a social distance from their fellow patients because they need to protect themselves [33]. According to Festinger's social comparison theory [34], people use other people rather than objective criteria as a basis for comparison. From the interREFERENCES views, we found many instances of social comparison 1. Field D. and James N. Where and how people die. which on the whole appeared to be helpful to In The Future of Palliative Care (Edited by Clark D.), patients, as they perceived others to be worse off pp. 6-29. Open University Press, Buckingham, 1993. than themselves. There is evidence that cancer 2. Directory of Hospice and Palliative Care Services. Hospice Information Service, Sydenham, London, patients use fellow patients as a reference group [35], 1994. [33] and that there is a tendency to denigrate others 3. Sykes N. P., Pearson S. E. and Chell S. Quality of in the process. For example, patients may emphasize care of the terminally ill: the carer's perspective. the more negative attributes of others, especially in Palliative Medicine 6, 227-236, 1992. 4. Field D. Nursing the Dying. Routledge, London, relation to symptoms. Social identity theory would 1989. predict that people have both a personal identity and 5. Glaser B. G. and Strauss A. L. Awareness of Dying. a group identity [36]. It is possible that patients who Aldine, Chicago, 1965. are not socially engaged with others in the hospice 6. Sudnow D. Passing On: The Social Organisation of Dying. Prentice-Hall, Englewood Cliffs, NJ, 1967. fail to acquire a group identity. 7. Kubler-Ross E. On Death and Dying. New York, This study aimed to understand to what extent Macmillan, 1969. patients were aware of their own impending death. We 8. James N. and Field D. The routinization of hospice: wished to know how they understood the construct charisma and bureaucratization. Social Science & "good death". It has been suggested that the "good Medicine 34 (12), 1363-1375, 1992. 9. Seale C. Communication and awareness about death: death" has become an ideal institutionalized by the a study of a random sample of dying people. Social hospice movement [37]. Patients were more likely to Science & Medicine 32 (8). 943-952, 1991. mention that a "good death" occurred in one's sleep, 10. Saunders C. The philosophy of terminal care. In The although quietness, pain control and dignity were also Management of Terminal Disease (Edited by Saunders important issues. Some patients provided narratives of C.), pp. 193-202. Edward Arnold, London, 1978. the deaths they had known. In these narratives, they 11. Coleman P. G. Identity management in later life. In Handbook of the Clinical Psychology of Ageing (Edited were able to highlight features of the deaths that repby Woods R.), pp. 93-113. Wiley, Chichester, 1995. resented to them good and bad aspects. Thus, in these 12. Mackay L. Conflicts in Care. Chapman and Hall, interviews, death was not usually constructed as an London, 1993. abstract phenomenon that could be analysed in its con- 13. Manning M. The Hospice Alternative: Living with Dying. Condor Books, Souvenir Press, London, stitnent parts but was presented to us as actual stories 1984. embedded in their social context. This corresponds 14. Honeybun J., Johnston M. and Tookman A. The with Taylor's [38] findings and conclusions in a study impact of death on fellow hospice patients. British Journal of Medical Psychology 65, 67-72, 1992. of hospice nurses' concepts of death, that narratives

1794

Sheila Payne et al.

15. Hunt M. "Scripts" for dying at home---displayed in nurses', patients' and relatives' talk. Journal of Advanced Nursing 17, 1297-1302, 1992. 16. Littlewood J. Aspects of Grief. London, Routiedge, 1992. 17. Standing Medical Advisory Committee and Standing Nursing and Midwifery Advisory Committee. The Principles and Provision of Palliative Care, Joint Report. HMSO, London, 1992. 18. Bryant A. and Payne S. Difficulties inherent in research with cancer patients. Journal of Cancer Care 2, 143-146, 1993. 19. de Raeve L. Ethical issues in palliative care research. Palliative Medicine 8, 298-305, 1994. 20. Mount B. M. et al. Ethical issues in palliative care research revisited. Palliative Medicine 9, 165-170, 1995. 21. Zigmond A. S. and Snaith R. P. The Hospital Anxiety and Depression scale. Acta Psychiatria Scandinavia 67, 361-370, 1983. 22. Moorey S. et al. The factor su'ucture and factor stability of the Hospital Anxiety and Depression scale in patients with cancer. British Journal of Psychiatry 158, 255-259, 1991. 23. Carroll B. T. et al. Screening for depression and anxiety using the Hospital Anxiety and Depression scale. General Hospital Psychiatry 15, 69-74, 1993. 24. Silverstone P. H. Poor efficacy of the Hospital Anxiety and Depression scale in the diagnosis of major depressive disorder in both medical and psychiatric patients. Journal of Psychosomatic Research 38 (5), 441--450, 1994. 25. Lloyd Williams M. Assessing depression in the hospice population using the Hospital Anxiety and Depression scale---a pilot study. Journal of Cancer Care 3, 164-165, 1994. 26. Strauss A. L. and Corbin J. Basics of Qualitative Research: Grotolded Theory Procedare$ and Techniques. Sage, Newbury Park, CA, 1990.

27. Hinton J. Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives? Palliative Medicine 8, 183-196, 1994. 28. Reissman C. K. Narrative Analysis. Sage, London, 1993. 29. Pinder K. L., Ramirez A. J., Richards M. A. and Gregory W. M. Cognitive responses and psychiatric disorder in women with operable breast cancer. Psycho-Oncology 3, 129-137, 1994. 30. Mermeistein H. T. and Lesk L. Depression in patients with cancer. Psycho-Oncology I, 199-215, 1992. 31. Popay J., Bartiey M. end Owen C. Gender inequalities in health: social position, alfective disorders and minor physical morbidity. Social Science & Medicine 36 (1), 21-32, 1993. 32. Macintyre S. Gender differences in the perception of common cold symptoms. Social Science & Medicine 36 (1), 15-20, 1993. 33. Isaksen A. S. The sicnlflcance of fellow patients to hospitalized cancer patients. Paper presented at the 8th International Conference on Cancer Nursing, Vancouver, Canada, 1994. 34. Festinger L. A theory of social comparison processes. Human Relations 7, 117-140, 1954. 35. Payne S. Quality of life in women with advanced cancer. Unpublished PhD thesis. University of Exeter, Exeter, 1989. 36. Brewer M. B. The social self: on being the same and different at the same time. Personality and Social Psychology Bulletin 17, 475--482, 1991. 37. McNamara B., Waddell C. and Colvin M. The institutionalization of the good death. Social Science & Medicine 39 (11), 1501-1508, 1994. 38. Taylor B. Hospice nurses tell their stories about a good death: the value of storytelling as a qualitative health research method. Annual Rei,iew of Health and Social Science 3, 97-108, 1993.