DYING AT HOME
Home or hospital? Terminal care as seen by surviving spouses C. MURRAY PARKES, mdfrcpsych Senior Lecturer in Psychiatry, London Hospital Medical College, University of London SUMMARY. Among 276 married patients with under the age of 65 who died in two South London boroughs during the period 1967 to 1971, 41 were still under active treatment at the time of death. I studied the remaining 85 per cent who experienced some form of terminal care, and in particular compared reports by the surviving spouses of 65 patients whose care was homecentred and 100 hospital-centred patients. Although home-centred care was most often chosen for patients who were said to have had little severe pain before the period of terminal cancer
care, during that period there was a sharp increase in reports of pain, much of it severe and
unrelieved. Hospital-centred patients were said have had much less pain and more confusion during the final phase of care and were more likely to have been conf ined to bed than those at home. The amount of anxiety reported by the patient's spouse was not markedly different under the two patterns of care, nor did the pattern of care influence subsequent adjustment to bereavement. Qualitative differences between the two groups are considered and it is concluded that although home-centred care can be successful it is often associated with unnecessary suffering. Implications for the home care of the terminally ill are discussed. to
Introduction
only minority of British people die ALTHOUGH home large proportion spend part of their at
a
L
a
some
last year of life at home and about half receive some form of nursing care at home (Cartwright et al., 1973). In particular, Ward (1974) has shown that in the care of terminal cancer patients in Sheffield "the greater share of the burden of care fell on the home". © Journal of the Royal College of General Practitioners, 1978,28, 19-30.
Journal of the Royal College of General Practitioners,
Cartwright interviewed a large stratified sample of surviving relatives of patients from all over Britain. Among those patients who had been admitted to hospital but had subsequently been discharged and died
at homeno less than 84 per cent were said to-have suffered "very distressing symptoms". Pain, sleeplessness, vomiting, anorexia, constipation, bed sores, dyspnoea, and depression all increased in incidence after discharge from hospital and there is evidence of a considerable amount of suffering. Cartwright's figures give no grounds for satisfaction and we clearly need to know more about the various patterns of care which are provided during the terminal period and the problems for both patient and family which are associated with each pattern of care if we are to improve standards of care. My findings are repprted of a study of the views of surviving spouses concerning the care given to cancer patients whose condition deteriorated and ended fatally after active treatment (seeking to prolong life) had been
completed. Method
With the assistance of the Registrar General's Office we able to write to spouses under the age of 65 of unselected persons who had died of cancer in the south London boroughs of Lewisham and Bromley during the period 1967 to 1971. Older respondents were not included for fear that their memory of the events leading up to the patient's death would be impaired. Those who could be located and who agreed to help were subsequently visited in their homes on average 13 months after bereavement (± two months). The interviewers were mature women selected for their tact and sensitivity. Interviews were open-ended and semistructured: the interviewer had a series of questions to which she sought an answer, but she encouraged the respondents to talk freely about the topics raised and recorded relevant verbatim comments to illustrate and expand the information obtained. Questions focused mainly on the period of care from were
January 1978
19
Dying at Home
Nearly half
in social class 3
(skilled
Table 1. Source of sample.
per cent.
Number written to 435 Moved away or not located 64 Dead, too ill, or unable to communicate 12 107 (25) Preferred not to participate Interviewed for study 276
To test the reliability of the interviewers' assessments of pain, 15 interviews were attended by a psychologist who made her own ratings of severity and continuity of pain independently of the interviewer. There was complete agreement regarding maximum severity of pain on a six-point scale in II cases with one-point disagreement in two and the remaining two cases rated as "not known" by the psychologist. Continuity of pain was rated on a five-point scale. Here there was complete agreement in ten cases, one-point disagreement in two, and three were rated as "not known" by the
were
manual).
the end of active treatment to the patient's death. This was termed the "period of terminal care". It was further subdivided into phases according to the site of care (at home or in hospital). Separate information was obtained about the patient's pain, mental state, and insight, and the respondent's own anxieties and reactions to each successive phase of terminal care. Particular attention was paid to the amount and duration of any pain said to have been experienced by the patient because this was the most prominent cause of distress and, when unrelieved, could usually be regarded as an index of inadequate terminal care. We did not press respondents to answer particular questions if they found them distressing. Usually, however, the interviewers formed a good relationship with the respondents and were able to help them through any episodes of distress which were evoked by the interview. Consequently most respondents seemed glad of the opportunity to talk about this period of their lives. Analysis of the quantitative data was conducted by parametric and non-parametric means, as appropriate. When percentages are reported "not knowns" are not included in the data base.
Results Out of 435 surviving spouses contacted, 276 took part in the study (Table 1). Respondents comprised 147 widows and 129 widowers of mean age 57 years. They came from all social class groups (Office of Population Censuses and Studies, 1970): social class 1, 12 per cent; 2, 18 per cent; 3, 46 per cent; 4, 17 per cent; and 5, six
psychologist. Patterns of care
Forty-nine patients (18 per cent) were still under active
death, but for the great was a period of time there majority (82 per cent) between the end of active treatment (aimed primarily at prolonging life) and the patient's death. This is the period of terminal care. The duration of terminal care varied greatly with a median of nine weeks. One third (74) died within four weeks of the onset of terminal care, another third (77) died within five to 15 weeks, and only two survived for more than two years. One hundred and thirty-eight patients (62 per cent of those who received terminal care and half of the total sample) spent some of the terminal period at home. One hundred and sixty-two patients (73 per cent of those who received terminal care and 60 per cent of the total sample) spent some of the terminal period in hospital, and all of these died in hospital. In all, patients in the sample spent 3,467 weeks at home (median 20 weeks per patient) and 1,067 weeks in hospital (median four wpeks per patient); that is, they spent three and a half times as long at home as in
treatment at the time of their
hospital.
The total sample is shown in Table 2. For the purposes of further analysis subdivisions 1 and 8 were omitted and subdivisions 2, 3, and 4 were combined to form the "home-centred group". Groups
Table 2. Analysis of total sample.
centred
1. 2. 3. 4.
Hospital-
5. 6. 7. 8.
Home-
centred
Total 20
period (died under active treatment) Died at home after spending 5 or more weeks there Died after shorter periods at home At home 5 or more weeks; admitted to hospital to die within 1 week Part of terminal period at home. Died after 1-6 weeks in hospital No terminal period at home. Died after 1-6 weeks in hospital Died after 6 or more weeks in hospital All other cases; most had readmissions to hospital or the respondent was unable to give reliable information No terminal
18 276
700
Journal of the Royal College of General Practitioners, January 1978
Dying at Home Table 3. Comparison of home-centred and hospital-centred care .features present before terminal
period (figures in percentages).
Home-
Hospital-
centred centred n
Sex of patient Mean age of respondent Socio-economic status
=
65
n
=
100
Probability
Male Female GRO Group l-ll
III IV-V
Intelligence of respondent Bright
-
(interviewer's estimate) Average
Anxiety of respondent
very bright
Below average Greator very great Other
Marriage Happy (interviewer's impression) Unhappy or mixed Pain of patient N/S
=
Insuff icient information to make assessment Severe and mostly continuous Other
not significant.
similarly amalgamated to form the "hospital-centred group". Hospital care for the terminally ill in the area of study is provided by a number of general hospitals and St Christopher's Hospice, Sydenham. Because the care provided at St Christopher's is different from that provided in most other hospitals, and definitely atypical of the country as a whole, 44 patients who had died there were made the object of a separate study and were excluded from further analysis here. We are left with 165 respondents, 65 of whose spouses received homecentred care and the remaining 100, hospital-centred 5, 6, and 7
were
care.
Comparison of home-centred and hospital-centred care comparing the two main patterns of care it is important to recognize that each was given for a reason.there was nothing fortuitous in the assignment of patients to either pattern of care. However, it was not always obvious to the interviewer why one patient had remained at home throughout most of the terminal period whereas another had spent the entire time in hospital. A comparison of the features of the home-centred and hospital-centred groups which were present before the terminal period, and which might have been expected to determine which form of care would be selected, is shown in Table 3. It is clear that the two In
groups
are
of similar age, sex, and socio-economic
status and that such factors as the intelligence level of the patient's spouse, the extent to which he or she recalls being greatly anxious, or whether the marriage was seen as happy or unhappy do not seem to have had much influence on the decision as to whether the patient should be cared for at home or in hospital. Only one factor emerges as a significant determinant of the pattern of care. Six per cent of the home-centred and 19 per cent of the hospital-centred patients were said to have suffered severe unrelieved pain before the terminal period (p
Home or hospital? Terminal care as seen by surviving spouses C. MURRAY PARKES, mdfrcpsych Senior Lecturer in Psychiatry, London Hospital Medical College, University of London SUMMARY. Among 276 married patients with under the age of 65 who died in two South London boroughs during the period 1967 to 1971, 41 were still under active treatment at the time of death. I studied the remaining 85 per cent who experienced some form of terminal care, and in particular compared reports by the surviving spouses of 65 patients whose care was homecentred and 100 hospital-centred patients. Although home-centred care was most often chosen for patients who were said to have had little severe pain before the period of terminal cancer
care, during that period there was a sharp increase in reports of pain, much of it severe and
unrelieved. Hospital-centred patients were said have had much less pain and more confusion during the final phase of care and were more likely to have been conf ined to bed than those at home. The amount of anxiety reported by the patient's spouse was not markedly different under the two patterns of care, nor did the pattern of care influence subsequent adjustment to bereavement. Qualitative differences between the two groups are considered and it is concluded that although home-centred care can be successful it is often associated with unnecessary suffering. Implications for the home care of the terminally ill are discussed. to
Introduction
only minority of British people die ALTHOUGH home large proportion spend part of their at
a
L
a
some
last year of life at home and about half receive some form of nursing care at home (Cartwright et al., 1973). In particular, Ward (1974) has shown that in the care of terminal cancer patients in Sheffield "the greater share of the burden of care fell on the home". © Journal of the Royal College of General Practitioners, 1978,28, 19-30.
Journal of the Royal College of General Practitioners,
Cartwright interviewed a large stratified sample of surviving relatives of patients from all over Britain. Among those patients who had been admitted to hospital but had subsequently been discharged and died
at homeno less than 84 per cent were said to-have suffered "very distressing symptoms". Pain, sleeplessness, vomiting, anorexia, constipation, bed sores, dyspnoea, and depression all increased in incidence after discharge from hospital and there is evidence of a considerable amount of suffering. Cartwright's figures give no grounds for satisfaction and we clearly need to know more about the various patterns of care which are provided during the terminal period and the problems for both patient and family which are associated with each pattern of care if we are to improve standards of care. My findings are repprted of a study of the views of surviving spouses concerning the care given to cancer patients whose condition deteriorated and ended fatally after active treatment (seeking to prolong life) had been
completed. Method
With the assistance of the Registrar General's Office we able to write to spouses under the age of 65 of unselected persons who had died of cancer in the south London boroughs of Lewisham and Bromley during the period 1967 to 1971. Older respondents were not included for fear that their memory of the events leading up to the patient's death would be impaired. Those who could be located and who agreed to help were subsequently visited in their homes on average 13 months after bereavement (± two months). The interviewers were mature women selected for their tact and sensitivity. Interviews were open-ended and semistructured: the interviewer had a series of questions to which she sought an answer, but she encouraged the respondents to talk freely about the topics raised and recorded relevant verbatim comments to illustrate and expand the information obtained. Questions focused mainly on the period of care from were
January 1978
19
Dying at Home
Nearly half
in social class 3
(skilled
Table 1. Source of sample.
per cent.
Number written to 435 Moved away or not located 64 Dead, too ill, or unable to communicate 12 107 (25) Preferred not to participate Interviewed for study 276
To test the reliability of the interviewers' assessments of pain, 15 interviews were attended by a psychologist who made her own ratings of severity and continuity of pain independently of the interviewer. There was complete agreement regarding maximum severity of pain on a six-point scale in II cases with one-point disagreement in two and the remaining two cases rated as "not known" by the psychologist. Continuity of pain was rated on a five-point scale. Here there was complete agreement in ten cases, one-point disagreement in two, and three were rated as "not known" by the
were
manual).
the end of active treatment to the patient's death. This was termed the "period of terminal care". It was further subdivided into phases according to the site of care (at home or in hospital). Separate information was obtained about the patient's pain, mental state, and insight, and the respondent's own anxieties and reactions to each successive phase of terminal care. Particular attention was paid to the amount and duration of any pain said to have been experienced by the patient because this was the most prominent cause of distress and, when unrelieved, could usually be regarded as an index of inadequate terminal care. We did not press respondents to answer particular questions if they found them distressing. Usually, however, the interviewers formed a good relationship with the respondents and were able to help them through any episodes of distress which were evoked by the interview. Consequently most respondents seemed glad of the opportunity to talk about this period of their lives. Analysis of the quantitative data was conducted by parametric and non-parametric means, as appropriate. When percentages are reported "not knowns" are not included in the data base.
Results Out of 435 surviving spouses contacted, 276 took part in the study (Table 1). Respondents comprised 147 widows and 129 widowers of mean age 57 years. They came from all social class groups (Office of Population Censuses and Studies, 1970): social class 1, 12 per cent; 2, 18 per cent; 3, 46 per cent; 4, 17 per cent; and 5, six
psychologist. Patterns of care
Forty-nine patients (18 per cent) were still under active
death, but for the great was a period of time there majority (82 per cent) between the end of active treatment (aimed primarily at prolonging life) and the patient's death. This is the period of terminal care. The duration of terminal care varied greatly with a median of nine weeks. One third (74) died within four weeks of the onset of terminal care, another third (77) died within five to 15 weeks, and only two survived for more than two years. One hundred and thirty-eight patients (62 per cent of those who received terminal care and half of the total sample) spent some of the terminal period at home. One hundred and sixty-two patients (73 per cent of those who received terminal care and 60 per cent of the total sample) spent some of the terminal period in hospital, and all of these died in hospital. In all, patients in the sample spent 3,467 weeks at home (median 20 weeks per patient) and 1,067 weeks in hospital (median four wpeks per patient); that is, they spent three and a half times as long at home as in
treatment at the time of their
hospital.
The total sample is shown in Table 2. For the purposes of further analysis subdivisions 1 and 8 were omitted and subdivisions 2, 3, and 4 were combined to form the "home-centred group". Groups
Table 2. Analysis of total sample.
centred
1. 2. 3. 4.
Hospital-
5. 6. 7. 8.
Home-
centred
Total 20
period (died under active treatment) Died at home after spending 5 or more weeks there Died after shorter periods at home At home 5 or more weeks; admitted to hospital to die within 1 week Part of terminal period at home. Died after 1-6 weeks in hospital No terminal period at home. Died after 1-6 weeks in hospital Died after 6 or more weeks in hospital All other cases; most had readmissions to hospital or the respondent was unable to give reliable information No terminal
18 276
700
Journal of the Royal College of General Practitioners, January 1978
Dying at Home Table 3. Comparison of home-centred and hospital-centred care .features present before terminal
period (figures in percentages).
Home-
Hospital-
centred centred n
Sex of patient Mean age of respondent Socio-economic status
=
65
n
=
100
Probability
Male Female GRO Group l-ll
III IV-V
Intelligence of respondent Bright
-
(interviewer's estimate) Average
Anxiety of respondent
very bright
Below average Greator very great Other
Marriage Happy (interviewer's impression) Unhappy or mixed Pain of patient N/S
=
Insuff icient information to make assessment Severe and mostly continuous Other
not significant.
similarly amalgamated to form the "hospital-centred group". Hospital care for the terminally ill in the area of study is provided by a number of general hospitals and St Christopher's Hospice, Sydenham. Because the care provided at St Christopher's is different from that provided in most other hospitals, and definitely atypical of the country as a whole, 44 patients who had died there were made the object of a separate study and were excluded from further analysis here. We are left with 165 respondents, 65 of whose spouses received homecentred care and the remaining 100, hospital-centred 5, 6, and 7
were
care.
Comparison of home-centred and hospital-centred care comparing the two main patterns of care it is important to recognize that each was given for a reason.there was nothing fortuitous in the assignment of patients to either pattern of care. However, it was not always obvious to the interviewer why one patient had remained at home throughout most of the terminal period whereas another had spent the entire time in hospital. A comparison of the features of the home-centred and hospital-centred groups which were present before the terminal period, and which might have been expected to determine which form of care would be selected, is shown in Table 3. It is clear that the two In
groups
are
of similar age, sex, and socio-economic
status and that such factors as the intelligence level of the patient's spouse, the extent to which he or she recalls being greatly anxious, or whether the marriage was seen as happy or unhappy do not seem to have had much influence on the decision as to whether the patient should be cared for at home or in hospital. Only one factor emerges as a significant determinant of the pattern of care. Six per cent of the home-centred and 19 per cent of the hospital-centred patients were said to have suffered severe unrelieved pain before the terminal period (p
