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Bereavement care: relationships between the intensive care unit and the general practitioner
htiue and CtillCd Can Nursing (1994) 0 Longman Group Ltd 1994
10,257-t&4
Bereavement care: relationships between the intensive care unit and the general practitioner Heather Peters and David Lewin
This study examines relationships between an intensive care unit and the general practitioners within a local health authority in respect of bereavement care. A questionnaire to all 113 local general practitioners generated a response from 67 (59.3%). While about two-fifths of respondents reported at least one of their patients dying on the intensive care unit, half said that they were often first informed by relatives. Although four-fifths of inner city general practitioners offered some form of bereavement service, it ranked lowest in terms of priority on time, and a further one-seventh provided no service at all. Half the respondents thought that hospital staff could do more to help. The implications for practice are discussed.
INTRODUCTION The main aim of the research in general was to explore relationships between the intensive care unit and the general practitioner in respect of bereavement care, counselling and support. In particular, the study was to identify: 1. How soon general practitioners received information from the hospital that their patients had died in the intensive care unit. 2. What bereavement care was already offered by general practitioners. 3. If earlier notification of patient death in the intensive care unit might improve general practitioners’ care to bereaved relatives.
Neathor Petus RGN,Staff Nurse, Intensive Care Unit, Royal London Hospital, DavMLewin BA, RGN, RNT, Director of Clinical Nursing Research, Royal Hospitals’ NHS Trust, Whitechapel, London El 1BB. UK (Requests for offprints to DL) Manuscript
accepted 2 September
1994
4. Whether relatives and friends of patients dying in the intensive care unit were perceived to have specific bereavement counselling needs. 5. How, in the initial stage, general practitioners best preferred intensive care unit staff to respond.
LITERATURE REVIEW This section presents a selective literature review relating to the broad areas of bereavement care, counselling and support, focusing particularly on current practice in a range of specialisms. Although handling distressed relatives and breaking bad news is generally regarded as an under-emphasised element of medical and nursing training, it is a time that relatives always remember vividly and, if managed badly, may leave lasting scars (McLauchlan 1990). There is general agreement that, whenever possible, relatives should be given a clear, simple explanation of the cause of death, time to react and ask ques tions; and that hurried behaviour, platitudes, false 257
258
INTENSIVE AND CRITICAL CARE NURSING
sympathy and euphemisms should all be avoided. The opportunity to see the body after death should always be offered since this is an important aspect of accepting reality. The patient’s general practitioner should normally be informed as soon as practicable, and follow-up bereavement care may need initiating at an early stage.
Infant and childhood death While infants dying from sudden infant death syndrome do not reach the intensive care unit, there is considerable literature in this area (Southall 1986, Sadeh 1987, Woolsey 1988), and the principles for supporting bereaved parents appear well established (Jezierski 1989, Walker 1990). Many centres actively encourage parents to hold their children after death, arguing that, particularly after sudden death, it both helps parents grasp the reality of the tragedy and assists the healing process by lessening the time for denial. Although very little may be recalled at this time, parents remember in detail their treatment by the healthcare team (Sarnoff-Schiff 1979, Manning 1985, Miles 1985). Some have suggested that caring for parents during and after the death of a child may be the most demanding component in paediatric intensive care nursing (Henretta 1982, Korth 1990).
Terminal care Terminal care literature imparts valuable insights into bereavement from both a nursing and family perspective. Some studies have shown that nursing staff may experience feelings of helplessness, inadequacy and depression when dealing with the terminally ill (Friehl 1980, Mendel 1981), which may detract from the quality of terminal care (Thomson 1988). Analgesia may fail unless attention is paid to the patient’s personality, attitudes, emotional and spiritual needs (Doyle 1985). Bereavement may begin well before the patient dies, often from the moment when relatives are informed that recovery is unlikely. Throughout this period of anticipatory grief (Lindemann 1944)) patients cannot be helped in a meaningful way unless the family is included (Kubler-Ross
1970)) and expert communication maintained with relatives (Manley 1988). Reassurance that patients will not suffer pain or distress, that someone will be with them at the time of death, and that professional support is available subsequently if required, are all significant to those for whom no hope of ultimate recovery can be promised (Penson 1988). Hampe (1975) found that spouses believed the nurse’s primary responsibility was exclusively to the patient and they would be too busy to help relatives. Relatives favoured open visiting for dying patients, prompt help with physical care and a demonstration of friendly concern from the nursing staff. There is ample research evidence, however, from the intensive care unit setting that, despite the best profes sional intentions, family members are often ignored and staff contact with them is brief (Molter 1979, Daley 1984, Brown 1987).
Accident and emergency department and intensive care unit While some aspects of bereavement care are almost universal (Hayes 1990), particular care settings may influence the needs of relatives. Ashdown (1985) followed up a cohort of relatives bereaved in an accident and emergency department about 1 year previously, and found that the experience of sudden death of a relative was imprinted indelibly on their minds. The location, ambience and perceived isolation of the relatives’ room were regrettably recalled. Although many relatives had never seen a body previously, and were afraid of the prospect, they were reassured by the discreet presence of a nurse nearby. Some never understood the cause of death written on the death certificate. Some intensive care unit research suggests that relatives regard ready access to doctors as being of the greatest importance and increased anxiety and frustration are associated with difficult access to medical staff (Coulter 1989). Other literature explores sudden death and bereavement from perspectives which may incapacitate the carers (Manning 1985, Wright 1988) while classical studies have explored the psychological mechanisms of grief and adjustment (Parkes 1972, Hinton
INTENSIVEANDCRITICALCARENURSING
1972, Kastenbaum 1977). Focusing on death with dignity, Green (1989) summarised information and guidelines on the requirements of five different religions for care of the dying and preparation of the dead.
Links between acute bereavement care and general practice The majority of authors acknowledge the desirability of continuing bereavement care in order to the grieving period manage successfully. Depression, anxiety and flashbacks are all reported as elements in the bereavement process, as are unhelpful actions by friends and neighbours (McLauchlan 1990). While the general practitioner is regarded as integral to effective longer-term management, links between bereavement care in hospital and general practice have been largely unexplored and are thus the main focus of this study.
259
appeared to confirm the face and content validity of the research tool. Following discussions with consultant medical staff and senior nurses, plans were drawn up for a main study. The research proposal was submitted to the Tower Hamlets District Local Research Ethics Committee. Once approved, questionnaires with covering letters were sent to all local general practitioners. Stamped, addressed envelopes were enclosed for replies to be returned directly to the intensive care unit. After a month, those who had not replied were sent reminder letters and questionnaires.
DATA ANALYSIS Coding legends were devised, data transcribed onto coding sheets and analysis undertaken using SPSS data analysis and presentation software.
FINDINGS DESIGN AND METHOD The research employed a descriptive survey design. A general practitioner questionnaire was constructed with a mix of open and closed questions to give both breadth and depth to the inves tigation. Although open-ended questions may be marginally more difficult to analyse, they may enable exploration of areas where little work has been done previously. Closed questions were included to permit detailed comparisons. Postal questionnaires were chosen as the most appropriate survey method since mailing is a relatively efficient and inexpensive means of gathering substantial information from large numbers of respondents. The questionnaire was developed in a twostage process; prepilot testing was first undertaken over the telephone with three general practitioners known personally to the researcher. Following some refinement the pilot instrument was then sent to a further five general practitioners in various parts of the country, again known to the researcher. All were returned with encouraging remarks from respondents which
In this section, results are presented mainly as tables with supporting commentary. A total of 113 general practitioners were canvassed of whom 67 replied, a response rate of 59.3%. Table 1 presents general practitioners’ responses to the question, ‘Have any of your patients ever died on the intensive care unit at the Royal London Hospital?’ Of the 67 respondents, about twofifths (44.8%) had known of at least one of their patients dying in the intensive care unit. A similar proportion knew that none of their patients had died there while about one-tenth (11.9%) were unsure.
Tablo 1 Pationta known to have dii
on the intmsive care
unit
Cateuorv Y8S
No Not sure Total
No.
30 29 8 67
%
44.8 43.3
11.9 100.0
260
INTENSIVE AND CRITICAL CARE NURSING
Of the 30 general practitioners recalling patients dying in the intensive care unit, 25 responded to the question, ‘On average, how soon do you receive information from the hospital that one of your patients has died on the intensive care unit?‘. It can be seen (Table 2) that about one-third of respondents (32%) were informed within 2 days, a Further 28% within 3-4 days. Thus three-fifths of general practitioners were informed within 4 days. Taking the cohort as a whole, and averaging by midpoints, the mean time was 4.3 days.
Table 2 information from the intensive care unit received within
Categon/ l-2 days 3-4 days 5-7 days 8-24 days 1-14 days No information received
Total
No. 8 7 6 2 1
2:
% 32 28 24 8 4 4 100
All but one of the 67 general practitioners wished ideally to be informed of a patient’s death within 2 days, 63 (94%) preferring to be told specifically by a member of the intensive care unit staff. Many commented how helpful they found it to talk by telephone to staff in the first instance, preferring confirmation by letter or fax subsequently. Early notification was said to permit effective follow-up by the general practitioner or one of the primary care team. Respondents were asked how often, on average, relatives alerted them to the death of one of their patients on the intensive care unit. Of the 30 general practitioners who reported patients dying on the intensive care unit (Table 3) half said that they were often informed by relatives, a further one-third maintaining that this sometimes occurred. 22 of the 30 (73.3%) stated that this mode of communication caused them some concern.
Table 3 How often do relatives alert you to an intensive care unit death? Category
No.
%
Often Sometimes Rarely Total
15 10 5 30
50.0 33.3 16.7 100.0
Bereavement
service
Table 4 illustrates responses to the question, ‘Do you offer any type of bereavement service?‘. About four-fifths of general practitioners (82.1%) offered a bereavement service, another one-seventh (13.4%) not doing so. There were variations in the kind of bereavement service offered (Table 5). About three-fifths of general practitioners (63.6%) offered bereavement counselling and support to relatives seen in the surgery while about a seventh (14.5%) tended to visit them at home. About one-tenth of family doctors (10.9%) routinely referred relatives for specialised advice within the practice including help from community psychiatric nurses, psychologists or other counsellors.
Clinical priorities In order to place bereavement care in some kind of clinical context, general practitioners were shown five important areas of medical practice and invited to rank them on a lO-point scale in terms of perceived priority on their time, one being low and 10 high priority. Table 6 summarises clinical priority scores.
Table 4 Do you offer a bereavement service?
Category
No.
%
Yes No Non-response
55 :
82.1 13.4 4.5 100.0
Total
67
INTENSIVE AND CRITICAL CARE NURSING
261
Table 5 Bereavement services offered bv aeneral oractitioners Category
No.
%
Relatives seen in the surgery Relatives visited at home Referred for specialised help within the practice Routine part of GP care Refer to hospital bereavement service Advise on local bereavement services Refer for psychotherapy Total
35 8 6 2 2 1 1 55
63.6 14.5 10.9 3.6 3.6 1.8 1.8 99.8
Table 6 Clinical priority scores
Category
Mean score (out of IO)
Standard deviation
Coefficient of variation
Acute medicine Chronic illness Preventive medicine Antenatal care Bereavement care All specialisms
8.0 7.9 6.6 6.0 5.6 6.8
1.83 1.46 2.17 2.67 2.70 2.40
0.22 0.18 0.33 0.44 0.48 0.35
Of five categories,
bereavement
care ranks not
only lowest in terms of priority for time, but has the largest coefficient
of variation, suggesting that
74 suggestions,
Rank 1 2 3 4 5
received
from 45 general
tioners, fell broadly into five categories About one-third
of responses
practi-
(Table 9).
(31.1%)
empha-
doctors were least agreed in their perceptions
of
sised the need for hospital staff to give bereaved
this area. Not surprisingly,
of
relatives quality time by being with them, making
acute and chronic
the management
problems
rank first and sec-
them
welcome,
allowing
relationships
to form,
ond.
talking, listening,
Specific problems
Table 7 Do bereaved relatives have specific problems?
The doctors were asked how frequently, experience,
in their
they believed that relatives of patients
dying in the intensive care unit experienced
spe-
cific problems. While almost one-half considered
that
of respondents
bereaved
relatives
(46.3%) sometimes
experienced problems, almost two-fifths (38.8%) deemed this often to be the case (Table 7). Table
8 shows responses
your opinion,
to the question,
‘In
could hospital staff do more to help
bereaved relatives?‘. One-half of general
practitioners
(53.7%)
thought that hospital staff could do more to help. In conclusion, respondents were invited to suggest ways in which this might be done. A total of
empathising,
and giving honest
Category
No.
%
Sometimes Often Rarely Non-response Total
31 26 3 7 67
46.3 38.8 4.5 10.4 100.0
Table 8 Could hospital staff do more to help? Categotv
No.
%
Yes No Do not know Non-response Total
36 8 3 20 67
53.7 11.9 4.5 29.9 100.0
262
INTENSIVE AND CRITICAL CARE NURSING
Table 9 How hospital staff might help bereaved relatives? Category
No.
%
Provide quality time Encourage early contact with GP Provide counselling Offer continuity of hospital care Explain clearly the cause of death Identify those with bereavement needs Total
23 15 13 11 8 4 74
31.1 20.2 17.6 14.9 10.8 5.4 100.0
and exact information in an atmosphere of genuine understanding and support. A further one-fifth of suggestions (20.2%) mentioned the benefits of early contact with both the general practitioner and members of the primary health care team including district nurses and health visitors. A similar proportion (17.6%) considered that counselling should be provided on both a long- and short-term basis. About one-seventh of responses (14.9%) advocated some continuity of hospital care including follow-up appointments with consultants, contact with hospital clergy, referral to the hospital bereavement service and possibly an intensive care unit bereavement officer. One-tenth of responses (10.8%) stressed the importance of relatives being given a clear explanation of the cause of death.
DISCUSSION The main aim of the study was to discover how quickly local general practitioners heard from the hospital about the death of one of their patients in the intensive care unit. Although nearly all requested immediate information, only one-third were notified within 2 days, the average for the group being 4.3 days. Their comments indicated clearly that, in the first instance, immediacy of communication was more important than precise clinical detail, thus permitting early and effective follow-up for relatives by members of the practice. A telephone call made or fax sent by a member of the administrative or clerical staff were regarded as quite sufficient provided a detailed medical summary was also received within a few
days. Some respondents remarked that communication delays over patient death were not confined solely to the intensive care unit. However, there was no criticism of the content of hospital letters received by general practitioners. Information delays meant that half the family doctors often heard first from relatives about patients who had died, almost threequarters stating that such lapses in formal communication caused them concern. Four-fifths of general practitioners offered some kind of bereavement service although mechanisms and initiatives differed from practice to practice. By far the commonest strategy was to see relatives in the surgery, some doctors emphasising that bereavement follow-up care was best accomplished in the community. General practitioners considered themselves ideally placed to offer relatives support in terms of information, explanation and clarification where appropriate as well as initiating specialised help to facilitate the grieving process. About one-seventh of respondents did not offer bereavement services, implying a need for the hospital both to provide details of local organisations from which help and practical advice could be obtained, and an opportunity for relatives to revisit the intensive care unit if they so wished. Time devoted by family doctors to bereavement care ranked well below that required for acute, chronic, preventive and antenatal care, although twofifths considered that bereaved relatives often experienced problems meriting medical attention. One-half of the general practitioners believed that hospital staff could do more to help bereaved relatives mainly by improving the quality and
INTENSIVE AND CRITICAL CARE NURSING
duration of contact time, encouraging early contact with the primary health care team and offering continuity of hospital bereavement care and counselling.
Implications for practice This study has illustrated that while mechanisms for informing general practitioners about patient deaths are fairly good at present, there is, nevertheless, substantial room for improvement. Effective information must be transmitted quickly and accurately and an agreed policy should indicate how best this may be done. Perhaps in the first instance the nursing staff should telephone the general practitioner within 4 hours of the patient’s death. A second, closely related issue concerns an optimum strategy for sending detailed, medical summary letters promptly. Standards should be set and performance audited. Relatives should know that general practitioners will have been informed about the death and should probably be encouraged to contact their family doctors. Given evidence that one half of the general practitioners believed hospital staff could do more to help, one-seventh offered no form of bereavement service anyway, and those doing so ranked it lowest priority on their time, a strong case can be made for enhancing some aspects of the hospital bereavement service. Incremental improvements might easily be achieved if, for example, appropriate information booklets and leaflets were more readily available. There is ample evidence that relatives value quality time both with medical and nursing staff, which might imply more systematic relief at the bedside, particularly for nurses to do justice to this part of their role. Improved continuity of hospital care might be accomplished if relatives who so wished were offered follow-up appointments in the outpatient department within 1 or 2 months of the death. When longer-term patients die in the intensive care unit, relatives appear more likely to return to the unit. There is .perhaps . a need to establish a dedicated, long-term bereavement follow-up service. It would require, ideally, only a modest relational database and word-processing facilities,
263
and could be managed by a nurse working onehalf day a week, assisted from time to time by a member of the clerical staff. Data might be stored on the audit computer. Since bereavement care continues to be a neglected area of professional training, the need persists for staff teaching in an area fundamental to the activities of an intensive care unit.
Bereavement
support groups
CRUSE (for care of the bereaved), Cruse House, 126 Sheen Road, Richmond, Surrey TW9 IUR, UK Telephone: 071940 4818 Compassionate Friends (for bereaved relatives), 6 Denham Street, Bristol BSl5DQ, UK Telephone: 0272 292778 Foundation for the study of infant death, 15 Belgrave Square, London SWlX 8PS, UK Telephone: 071 235 1721 Samaritans (for the despairing), Road, Slough SLl lSN, UK Telephone: 0753 32713.
17 Uxbridge
References Ashdown M 1985 Sudden death. Nursing Mirror 16(18): 22-24 Brown E 1987 Meeting the needs of relatives. Care of the critically ill 3(6): 195-196, November-December Coulter M 1989 The needs of family members of patients in intensive care units. Intensive Care Nursing 5 ( 1) : 4-10 Daley L 1984 The perceived immediate needs of families with relatives in the intensive care setting. Heart and Lung 13(3): 231-237 Doyle D 1984 Palliative care. Croom Helm, London Friehl M, Tehnen C 1980 Counteracting burnout for the hospice care-giver. Cancer Nursing 3(4): 285-293, August Green J 1989 Death with dignity. Nursing Times 85(5) 5657; (6) 50-51; (7) 56-57; (8)65; (9) 40-41 Hamne S 1975 Needs of the mievinn mouse in a hospital se&g. Nursing Research<4(20)Tlkk120 * Hayes E 1990 Needs of family members of criticaIly ill oatients - a Northern Ireland uersoective. Intensive bare Nursine6(1): 25-29 ’ ‘ Henretta C 198”2Sudden paediatric death: meeting the needs of family and staff. Nurse Educator 13-16, Winter Hinton J 1972 Dying. Middlesex, Harmondsworth, Penguin
264
INTENSIVE AND CRITICAL CARE NURSING
Jenierski M 1989 Infant death: guidelines for support of parents in the emergency department. Journal of Emergency Nursing 15(6): 475-476, December Kastenbaum R 1977 Death, society and human experience. St Louis, CV Mosby Korth S 1988 Unexpected paediatric death in the emergency department. Journal of Emergency Nursing 14(5): 302-304, September Kubler-Ross E 1970 On death and dying. Tavistock, London Lindemann E 1944 Symptomatology and measurement of acute grief. American Journal of Psychiatry 101: 141-149 Manley K 1988 Death and loss: the needs and support of relatives. Nursing 3(32): 19-22, December Manning H 1985 Sudden death. Nursing Mirror 160( 18): 19-21 McLauchlan C 1990 Handling distressed relatives and breaking bad news. British Medical Journal 301: 1145-1149 Mendel H 1981 Nurses’ feelings about working with the dying. American Journal of Nursing 81(6): 1194-l 197 Miles M (1985 Parental responses to sudden accidental death of a child. Critical Care Quarterly 8: 73-84, June Molter N 1979 Needs of relatives of critically ill patients: a descriptive study. Heart and Lung a(2): 332-339
Parkes C 1972 Bereavement - studies of grief in adult life. Penguin, Harmondsworth Penson J 1988 Bereavement: the needs of the terminally ill patient’s family. Professional Nurse 3(5): 153-155, February Sadeh D 1987 Altered cardiac repolarisadon in some victims of sudden infant death syndrome. New England Journal of Medicine 317(24): 1501-1505, December Sarnoff-Schiff H 1979 The bereaved parent. London, Souvenir Press Social Security 1993 What to do after a death. D49, HMSO, London Southall D 1986 QT interval measurements before SIDS. Archives of Disease in Childhood 61: 327-333, April Thomson L 1988 New dimensions of death. Intensive Care Nursing 4(2): 62-66 Walker J 1990 Care in bereavement. Paediatric Nursing 2(8): 17-18, October Woolsey S 1988 Support after sudden infant death. AmericanJournalofNursing88(10): 1348-1351, October Wright B 1988 Sudden death: aspects which inacapacitate the carer. Nursing 3(31): 12-14, November.
10,257-t&4
Bereavement care: relationships between the intensive care unit and the general practitioner Heather Peters and David Lewin
This study examines relationships between an intensive care unit and the general practitioners within a local health authority in respect of bereavement care. A questionnaire to all 113 local general practitioners generated a response from 67 (59.3%). While about two-fifths of respondents reported at least one of their patients dying on the intensive care unit, half said that they were often first informed by relatives. Although four-fifths of inner city general practitioners offered some form of bereavement service, it ranked lowest in terms of priority on time, and a further one-seventh provided no service at all. Half the respondents thought that hospital staff could do more to help. The implications for practice are discussed.
INTRODUCTION The main aim of the research in general was to explore relationships between the intensive care unit and the general practitioner in respect of bereavement care, counselling and support. In particular, the study was to identify: 1. How soon general practitioners received information from the hospital that their patients had died in the intensive care unit. 2. What bereavement care was already offered by general practitioners. 3. If earlier notification of patient death in the intensive care unit might improve general practitioners’ care to bereaved relatives.
Neathor Petus RGN,Staff Nurse, Intensive Care Unit, Royal London Hospital, DavMLewin BA, RGN, RNT, Director of Clinical Nursing Research, Royal Hospitals’ NHS Trust, Whitechapel, London El 1BB. UK (Requests for offprints to DL) Manuscript
accepted 2 September
1994
4. Whether relatives and friends of patients dying in the intensive care unit were perceived to have specific bereavement counselling needs. 5. How, in the initial stage, general practitioners best preferred intensive care unit staff to respond.
LITERATURE REVIEW This section presents a selective literature review relating to the broad areas of bereavement care, counselling and support, focusing particularly on current practice in a range of specialisms. Although handling distressed relatives and breaking bad news is generally regarded as an under-emphasised element of medical and nursing training, it is a time that relatives always remember vividly and, if managed badly, may leave lasting scars (McLauchlan 1990). There is general agreement that, whenever possible, relatives should be given a clear, simple explanation of the cause of death, time to react and ask ques tions; and that hurried behaviour, platitudes, false 257
258
INTENSIVE AND CRITICAL CARE NURSING
sympathy and euphemisms should all be avoided. The opportunity to see the body after death should always be offered since this is an important aspect of accepting reality. The patient’s general practitioner should normally be informed as soon as practicable, and follow-up bereavement care may need initiating at an early stage.
Infant and childhood death While infants dying from sudden infant death syndrome do not reach the intensive care unit, there is considerable literature in this area (Southall 1986, Sadeh 1987, Woolsey 1988), and the principles for supporting bereaved parents appear well established (Jezierski 1989, Walker 1990). Many centres actively encourage parents to hold their children after death, arguing that, particularly after sudden death, it both helps parents grasp the reality of the tragedy and assists the healing process by lessening the time for denial. Although very little may be recalled at this time, parents remember in detail their treatment by the healthcare team (Sarnoff-Schiff 1979, Manning 1985, Miles 1985). Some have suggested that caring for parents during and after the death of a child may be the most demanding component in paediatric intensive care nursing (Henretta 1982, Korth 1990).
Terminal care Terminal care literature imparts valuable insights into bereavement from both a nursing and family perspective. Some studies have shown that nursing staff may experience feelings of helplessness, inadequacy and depression when dealing with the terminally ill (Friehl 1980, Mendel 1981), which may detract from the quality of terminal care (Thomson 1988). Analgesia may fail unless attention is paid to the patient’s personality, attitudes, emotional and spiritual needs (Doyle 1985). Bereavement may begin well before the patient dies, often from the moment when relatives are informed that recovery is unlikely. Throughout this period of anticipatory grief (Lindemann 1944)) patients cannot be helped in a meaningful way unless the family is included (Kubler-Ross
1970)) and expert communication maintained with relatives (Manley 1988). Reassurance that patients will not suffer pain or distress, that someone will be with them at the time of death, and that professional support is available subsequently if required, are all significant to those for whom no hope of ultimate recovery can be promised (Penson 1988). Hampe (1975) found that spouses believed the nurse’s primary responsibility was exclusively to the patient and they would be too busy to help relatives. Relatives favoured open visiting for dying patients, prompt help with physical care and a demonstration of friendly concern from the nursing staff. There is ample research evidence, however, from the intensive care unit setting that, despite the best profes sional intentions, family members are often ignored and staff contact with them is brief (Molter 1979, Daley 1984, Brown 1987).
Accident and emergency department and intensive care unit While some aspects of bereavement care are almost universal (Hayes 1990), particular care settings may influence the needs of relatives. Ashdown (1985) followed up a cohort of relatives bereaved in an accident and emergency department about 1 year previously, and found that the experience of sudden death of a relative was imprinted indelibly on their minds. The location, ambience and perceived isolation of the relatives’ room were regrettably recalled. Although many relatives had never seen a body previously, and were afraid of the prospect, they were reassured by the discreet presence of a nurse nearby. Some never understood the cause of death written on the death certificate. Some intensive care unit research suggests that relatives regard ready access to doctors as being of the greatest importance and increased anxiety and frustration are associated with difficult access to medical staff (Coulter 1989). Other literature explores sudden death and bereavement from perspectives which may incapacitate the carers (Manning 1985, Wright 1988) while classical studies have explored the psychological mechanisms of grief and adjustment (Parkes 1972, Hinton
INTENSIVEANDCRITICALCARENURSING
1972, Kastenbaum 1977). Focusing on death with dignity, Green (1989) summarised information and guidelines on the requirements of five different religions for care of the dying and preparation of the dead.
Links between acute bereavement care and general practice The majority of authors acknowledge the desirability of continuing bereavement care in order to the grieving period manage successfully. Depression, anxiety and flashbacks are all reported as elements in the bereavement process, as are unhelpful actions by friends and neighbours (McLauchlan 1990). While the general practitioner is regarded as integral to effective longer-term management, links between bereavement care in hospital and general practice have been largely unexplored and are thus the main focus of this study.
259
appeared to confirm the face and content validity of the research tool. Following discussions with consultant medical staff and senior nurses, plans were drawn up for a main study. The research proposal was submitted to the Tower Hamlets District Local Research Ethics Committee. Once approved, questionnaires with covering letters were sent to all local general practitioners. Stamped, addressed envelopes were enclosed for replies to be returned directly to the intensive care unit. After a month, those who had not replied were sent reminder letters and questionnaires.
DATA ANALYSIS Coding legends were devised, data transcribed onto coding sheets and analysis undertaken using SPSS data analysis and presentation software.
FINDINGS DESIGN AND METHOD The research employed a descriptive survey design. A general practitioner questionnaire was constructed with a mix of open and closed questions to give both breadth and depth to the inves tigation. Although open-ended questions may be marginally more difficult to analyse, they may enable exploration of areas where little work has been done previously. Closed questions were included to permit detailed comparisons. Postal questionnaires were chosen as the most appropriate survey method since mailing is a relatively efficient and inexpensive means of gathering substantial information from large numbers of respondents. The questionnaire was developed in a twostage process; prepilot testing was first undertaken over the telephone with three general practitioners known personally to the researcher. Following some refinement the pilot instrument was then sent to a further five general practitioners in various parts of the country, again known to the researcher. All were returned with encouraging remarks from respondents which
In this section, results are presented mainly as tables with supporting commentary. A total of 113 general practitioners were canvassed of whom 67 replied, a response rate of 59.3%. Table 1 presents general practitioners’ responses to the question, ‘Have any of your patients ever died on the intensive care unit at the Royal London Hospital?’ Of the 67 respondents, about twofifths (44.8%) had known of at least one of their patients dying in the intensive care unit. A similar proportion knew that none of their patients had died there while about one-tenth (11.9%) were unsure.
Tablo 1 Pationta known to have dii
on the intmsive care
unit
Cateuorv Y8S
No Not sure Total
No.
30 29 8 67
%
44.8 43.3
11.9 100.0
260
INTENSIVE AND CRITICAL CARE NURSING
Of the 30 general practitioners recalling patients dying in the intensive care unit, 25 responded to the question, ‘On average, how soon do you receive information from the hospital that one of your patients has died on the intensive care unit?‘. It can be seen (Table 2) that about one-third of respondents (32%) were informed within 2 days, a Further 28% within 3-4 days. Thus three-fifths of general practitioners were informed within 4 days. Taking the cohort as a whole, and averaging by midpoints, the mean time was 4.3 days.
Table 2 information from the intensive care unit received within
Categon/ l-2 days 3-4 days 5-7 days 8-24 days 1-14 days No information received
Total
No. 8 7 6 2 1
2:
% 32 28 24 8 4 4 100
All but one of the 67 general practitioners wished ideally to be informed of a patient’s death within 2 days, 63 (94%) preferring to be told specifically by a member of the intensive care unit staff. Many commented how helpful they found it to talk by telephone to staff in the first instance, preferring confirmation by letter or fax subsequently. Early notification was said to permit effective follow-up by the general practitioner or one of the primary care team. Respondents were asked how often, on average, relatives alerted them to the death of one of their patients on the intensive care unit. Of the 30 general practitioners who reported patients dying on the intensive care unit (Table 3) half said that they were often informed by relatives, a further one-third maintaining that this sometimes occurred. 22 of the 30 (73.3%) stated that this mode of communication caused them some concern.
Table 3 How often do relatives alert you to an intensive care unit death? Category
No.
%
Often Sometimes Rarely Total
15 10 5 30
50.0 33.3 16.7 100.0
Bereavement
service
Table 4 illustrates responses to the question, ‘Do you offer any type of bereavement service?‘. About four-fifths of general practitioners (82.1%) offered a bereavement service, another one-seventh (13.4%) not doing so. There were variations in the kind of bereavement service offered (Table 5). About three-fifths of general practitioners (63.6%) offered bereavement counselling and support to relatives seen in the surgery while about a seventh (14.5%) tended to visit them at home. About one-tenth of family doctors (10.9%) routinely referred relatives for specialised advice within the practice including help from community psychiatric nurses, psychologists or other counsellors.
Clinical priorities In order to place bereavement care in some kind of clinical context, general practitioners were shown five important areas of medical practice and invited to rank them on a lO-point scale in terms of perceived priority on their time, one being low and 10 high priority. Table 6 summarises clinical priority scores.
Table 4 Do you offer a bereavement service?
Category
No.
%
Yes No Non-response
55 :
82.1 13.4 4.5 100.0
Total
67
INTENSIVE AND CRITICAL CARE NURSING
261
Table 5 Bereavement services offered bv aeneral oractitioners Category
No.
%
Relatives seen in the surgery Relatives visited at home Referred for specialised help within the practice Routine part of GP care Refer to hospital bereavement service Advise on local bereavement services Refer for psychotherapy Total
35 8 6 2 2 1 1 55
63.6 14.5 10.9 3.6 3.6 1.8 1.8 99.8
Table 6 Clinical priority scores
Category
Mean score (out of IO)
Standard deviation
Coefficient of variation
Acute medicine Chronic illness Preventive medicine Antenatal care Bereavement care All specialisms
8.0 7.9 6.6 6.0 5.6 6.8
1.83 1.46 2.17 2.67 2.70 2.40
0.22 0.18 0.33 0.44 0.48 0.35
Of five categories,
bereavement
care ranks not
only lowest in terms of priority for time, but has the largest coefficient
of variation, suggesting that
74 suggestions,
Rank 1 2 3 4 5
received
from 45 general
tioners, fell broadly into five categories About one-third
of responses
practi-
(Table 9).
(31.1%)
empha-
doctors were least agreed in their perceptions
of
sised the need for hospital staff to give bereaved
this area. Not surprisingly,
of
relatives quality time by being with them, making
acute and chronic
the management
problems
rank first and sec-
them
welcome,
allowing
relationships
to form,
ond.
talking, listening,
Specific problems
Table 7 Do bereaved relatives have specific problems?
The doctors were asked how frequently, experience,
in their
they believed that relatives of patients
dying in the intensive care unit experienced
spe-
cific problems. While almost one-half considered
that
of respondents
bereaved
relatives
(46.3%) sometimes
experienced problems, almost two-fifths (38.8%) deemed this often to be the case (Table 7). Table
8 shows responses
your opinion,
to the question,
‘In
could hospital staff do more to help
bereaved relatives?‘. One-half of general
practitioners
(53.7%)
thought that hospital staff could do more to help. In conclusion, respondents were invited to suggest ways in which this might be done. A total of
empathising,
and giving honest
Category
No.
%
Sometimes Often Rarely Non-response Total
31 26 3 7 67
46.3 38.8 4.5 10.4 100.0
Table 8 Could hospital staff do more to help? Categotv
No.
%
Yes No Do not know Non-response Total
36 8 3 20 67
53.7 11.9 4.5 29.9 100.0
262
INTENSIVE AND CRITICAL CARE NURSING
Table 9 How hospital staff might help bereaved relatives? Category
No.
%
Provide quality time Encourage early contact with GP Provide counselling Offer continuity of hospital care Explain clearly the cause of death Identify those with bereavement needs Total
23 15 13 11 8 4 74
31.1 20.2 17.6 14.9 10.8 5.4 100.0
and exact information in an atmosphere of genuine understanding and support. A further one-fifth of suggestions (20.2%) mentioned the benefits of early contact with both the general practitioner and members of the primary health care team including district nurses and health visitors. A similar proportion (17.6%) considered that counselling should be provided on both a long- and short-term basis. About one-seventh of responses (14.9%) advocated some continuity of hospital care including follow-up appointments with consultants, contact with hospital clergy, referral to the hospital bereavement service and possibly an intensive care unit bereavement officer. One-tenth of responses (10.8%) stressed the importance of relatives being given a clear explanation of the cause of death.
DISCUSSION The main aim of the study was to discover how quickly local general practitioners heard from the hospital about the death of one of their patients in the intensive care unit. Although nearly all requested immediate information, only one-third were notified within 2 days, the average for the group being 4.3 days. Their comments indicated clearly that, in the first instance, immediacy of communication was more important than precise clinical detail, thus permitting early and effective follow-up for relatives by members of the practice. A telephone call made or fax sent by a member of the administrative or clerical staff were regarded as quite sufficient provided a detailed medical summary was also received within a few
days. Some respondents remarked that communication delays over patient death were not confined solely to the intensive care unit. However, there was no criticism of the content of hospital letters received by general practitioners. Information delays meant that half the family doctors often heard first from relatives about patients who had died, almost threequarters stating that such lapses in formal communication caused them concern. Four-fifths of general practitioners offered some kind of bereavement service although mechanisms and initiatives differed from practice to practice. By far the commonest strategy was to see relatives in the surgery, some doctors emphasising that bereavement follow-up care was best accomplished in the community. General practitioners considered themselves ideally placed to offer relatives support in terms of information, explanation and clarification where appropriate as well as initiating specialised help to facilitate the grieving process. About one-seventh of respondents did not offer bereavement services, implying a need for the hospital both to provide details of local organisations from which help and practical advice could be obtained, and an opportunity for relatives to revisit the intensive care unit if they so wished. Time devoted by family doctors to bereavement care ranked well below that required for acute, chronic, preventive and antenatal care, although twofifths considered that bereaved relatives often experienced problems meriting medical attention. One-half of the general practitioners believed that hospital staff could do more to help bereaved relatives mainly by improving the quality and
INTENSIVE AND CRITICAL CARE NURSING
duration of contact time, encouraging early contact with the primary health care team and offering continuity of hospital bereavement care and counselling.
Implications for practice This study has illustrated that while mechanisms for informing general practitioners about patient deaths are fairly good at present, there is, nevertheless, substantial room for improvement. Effective information must be transmitted quickly and accurately and an agreed policy should indicate how best this may be done. Perhaps in the first instance the nursing staff should telephone the general practitioner within 4 hours of the patient’s death. A second, closely related issue concerns an optimum strategy for sending detailed, medical summary letters promptly. Standards should be set and performance audited. Relatives should know that general practitioners will have been informed about the death and should probably be encouraged to contact their family doctors. Given evidence that one half of the general practitioners believed hospital staff could do more to help, one-seventh offered no form of bereavement service anyway, and those doing so ranked it lowest priority on their time, a strong case can be made for enhancing some aspects of the hospital bereavement service. Incremental improvements might easily be achieved if, for example, appropriate information booklets and leaflets were more readily available. There is ample evidence that relatives value quality time both with medical and nursing staff, which might imply more systematic relief at the bedside, particularly for nurses to do justice to this part of their role. Improved continuity of hospital care might be accomplished if relatives who so wished were offered follow-up appointments in the outpatient department within 1 or 2 months of the death. When longer-term patients die in the intensive care unit, relatives appear more likely to return to the unit. There is .perhaps . a need to establish a dedicated, long-term bereavement follow-up service. It would require, ideally, only a modest relational database and word-processing facilities,
263
and could be managed by a nurse working onehalf day a week, assisted from time to time by a member of the clerical staff. Data might be stored on the audit computer. Since bereavement care continues to be a neglected area of professional training, the need persists for staff teaching in an area fundamental to the activities of an intensive care unit.
Bereavement
support groups
CRUSE (for care of the bereaved), Cruse House, 126 Sheen Road, Richmond, Surrey TW9 IUR, UK Telephone: 071940 4818 Compassionate Friends (for bereaved relatives), 6 Denham Street, Bristol BSl5DQ, UK Telephone: 0272 292778 Foundation for the study of infant death, 15 Belgrave Square, London SWlX 8PS, UK Telephone: 071 235 1721 Samaritans (for the despairing), Road, Slough SLl lSN, UK Telephone: 0753 32713.
17 Uxbridge
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