- Email: [email protected]
Care of the Dying
12
Journal of Pain and Symptom Management
Vol. 21 No. 1 January 2001
Original Article
Care of the Dying: Setting Standards for Symptom Control in the Last 48 Hours of Life John Ellershaw, MA, FRCP, Carol Smith, RGN, BSc(Hons), Sue Overill, SRN, Sue E. Walker, RGN, DipHE(SNP), Judith Aldridge, BA(Hons)MA Marie Curie Centre Liverpool (J.E.E., C.S., S.W.), Woo lton; Royal Liverpool University Hospital (S.O.), Liverpool; and Department of Social Policy and Social Work (J.A.), University of Manchester, Manchester, United Kingdom
Abstract The hospice model of care of the dying patient is regarded as a model of excellence; however, outcomes of this care have been poorly demonstrated. Integrated Care Pathways (ICPs) provide a method of recording and measuring outcomes of care. The ICP document replaces all previous documentation and is a multiprofessional record of patient care. The aim of this study was to implement an ICP in an inpatient hospice setting in order to set standards of care for symptom control in the dying phase of a patient’s life. ICPs were analyzed from 168 inpatients who died over a one-year period. Symptoms of pain, agitation, and respiratory tract secretions (RTS) were monitored every four hours by nursing staff as either present or absent. For each symptom, 80% of patients had one episode or complete control of the symptom, 10% had two episodes, and 10% had three episodes or more recorded. As death neared, there was a statistically significant increase in the number of patients whose pain was controlled. The ICP has provided a means to measure symptom control in the dying patient and set standards of care, which is integrated into clinical practice. J Pain Symptom Manage 2001;21:12–17. © U.S. Cancer Pain Relief Committee, 2001. Key Words Palliative care, terminal care, outcome assessment (health care), pain, symptom control
Introduction The development of the modern hospice movement was stimulated by the poor quality of care of the dying patient.1 The hospice model of care is now espoused as a model of excellence and has led to a world-wide hospice movement, which aspires to deliver high quality care to dying patients not only in hospices but also in the community and hospitals.
Address reprint requests to: J.E. Ellershaw, MA, FRCP, Marie Curie Centre Liverpool, Speke Road. Woolton L25 8QA, United Kingdom. Accepted for publication: March 17, 2000. © U.S. Cancer Pain Relief Committee, 2001 Published by Elsevier, New York, New York
Although evidence-based guidelines for symptom control now exist regarding the care of the dying,2–5 little has been documented regarding the outcomes of symptom control in this population. Within health care, there is a need to measure and demonstrate the continuous improvement of the quality of patient care.6 Some outcome measures have been developed, for example the Support Team Assessment Schedule (STAS)7 , Edmonton Symptom Assessment Schedule (ESAS),8 and Palliative Care Assessment (PACA),9 but these measures do not encompass care of the dying patient. It is of increasing importance for hospice and palliative care units to demonstrate the quality 0885-3924/01/$–see front matter PII S0885-3924(00)00240-2
Vol. 21 No. 1 January 2001
Symptom Control Standards in the Last 48 Hours of Life
and outcomes of care in the context of clinical governance and resource allocation. Integrated care pathways (ICPs) are a method of implementing and monitoring best practice, and incorporating accepted guidelines and protocols into health care settings.10 The main development has been in North America, but increasingly ICPs are gaining popularity within the United Kingdom.11–13 ICPs provide a flowsheet of care, which has been locally developed by a multiprofessional team. It offers consistency in care without being prescriptive, allowing the healthcare professional to deviate from the care. The reason for the deviation is recorded and referred to as a ‘variance.’ The development of an ICP for the dying patient has previously been described.14 It includes three sections: an initial assessment, ongoing care, and care after death; with physical, psychosocial, and spiritual care contained in each section. The aim of this study was to implement the ICP for care of dying patients into clinical practice in the hospice setting to develop measurable outcomes and set standards regarding symptom control of pain, agitation, and respiratory tract secretions.
Methods Criteria for entry onto the ICP were that the multidisciplinary team agreed that the patient was dying and had at least two of the following: bedbound; semi-comatose; only able to take sips of fluid; no longer able to take tablets. Data from patients placed on the ICP who died in the hospice from February 1997 to February 1998 were analyzed, including diagnosis, gender, and age. As part of the ongoing assessment, observations for the control of the symptoms of pain, agitation, and respiratory tract secretions were monitored every four hours by nursing staff within the hospice. The observations for each symptom were categorized as either symptom present—which was marked as a ‘V’ denoting a variance (i.e., symptom not controlled)—or marked as ‘A’—denoting achieved (i.e., symptom controlled). For example, if the patient had pain at 12.00 hours this was recorded as ‘V’, and if the patient was pain-free at 16.00 hours this was recorded as ‘A’. Due to the subjective nature of the recording, prompts sup-
13
porting each goal are contained in the ICP in order to reduce observer bias.
Results Data were collected from 168 inpatients placed on the ICP for the dying patient who died at the hospice over a 13-month period from February 1997 to February 1998. This represents 53% of the total number of deaths over that period. Table 1 displays the demographic characteristics of the hospice patients. Table 2 displays the frequency distribution of number of days patients were on the ICP prior to death. Just under half of the patients remained on the ICP for 2 days or less prior to death. The mean and modal number of days on the ICP was 2 (SD ⫽ 1.38). Symptom observations of pain, agitation and respiratory tract secretions (RTS) recorded during the last 48 hours of life were analyzed for the frequency of symptom control. Table 3 displays the percentages of recorded uncontrolled symptoms and unrecorded observations for the three symptoms during the last 48 hours of life. Unrecorded observations were those not carried out by nursing staff. Across all three symptoms, unrecorded observations were highest on the final observation prior to death, with roughly one third of patients having no symptom observation recorded in the four hours before death. Unrecorded observations were highest for RTS, and roughly similar for pain and agitation. Recordings of uncontrolled symptoms during the last 48 hours of life (across all observations) were highest for RTS at 139 (17.3% of all observations), followed by agitation at 127 (13.4% of all observations), and then pain at 115 (12% of all observations). Thus, symptom control while on the ICP was achieved for 85% or more of patients, averaging across all observations.
Table 1 Demographic Characteristics of Patients Who Were on the ICP (n ⫽ 168) Male Female Mean age (years) Range Most frequent diagnosis: Lung cancer Breast cancer ICP ⫽ Integrated Care Pathways.
81 87 67 27–89 48 (28.1%) 21 (12.3%)
14
Ellershaw et al.
Table 2 Frequency Distribution of Number of Days Patients Were on ICP Days on ICP
n
%
1 2 3 4 5 6 7 8
41 74 26 15 6 1 3 2
24.4 44.0 15.5 8.9 3.6 0.6 1.8 1.2
ICP ⫽ Integrated Care Pathways.
Table 4 shows the percentages of symptoms not controlled for the 41 patients who were on the ICP for at least 48 hours or more. Recordings for uncontrolled symptoms during the last 48 hours of life (across all observations) were highest for RTS at 39 (13.1% of all observations), followed by pain at 35 (9.4% of all observations), and then agitation at 31 (8.1% of all observations). Percentages of uncontrolled symptoms for pain agitation and RTS are also graphically displayed in Figures 1, 2, and 3, which illustrate the trends shown in Table 4. The frequency of the 168 patients with none, one, two, and three or more recordings for uncontrolled symptoms during the last 48 hours of life are displayed in Table 5. In approximately 50% of patients, each symptom was controlled, 30% had one uncontrolled episode recorded and just over 10% had two episodes recorded,
Vol. 21 No. 1 January 2001
and fewer than 10% had three or more episodes of each symptom not controlled during the last 48 hours of life. Figures 1 and 2 display the trend line for the number of patients on the ICP for at least 48 hours with recorded observations of pain and agitation during the last 48 hours of life. It shows that as death neared fewer patients had episodes of pain or agitation. Figure 3 represents the percentages of patients for whom control of RTS was recorded as symptom uncontrolled during the last 48 hours of life. The trend line applied to the graph suggests a marked increase in the number of patients displaying signs of this symptom nearing death, particularly during the last 20 hours of life. McNemar’s test was used to compare the period covering hours 40–48 with hours 8–12 to see whether there had been any significant change in uncontrolled symptom between the two periods (uncontrolled symptom defined as uncontrolled symptom recorded at any observation point during the period). The test was used to compare the two periods to see whether there had been a significant increase or decrease in the number of patients with a symptom not controlled recording in the two periods. The only change which was statistically significant (P ⫽ 0.031) was for pain recordings, which decreased significantly. The changes for agitation and RTS were not significant. An independent t-test compared mean number of observations prior to death (used as a proxy measure for time spent on ICP) between
Table 3 Number of Patients With a Recording of Symptom Not Controlled and Unrecorded Observations During the Last 48 Hours of Life Observation Hours before death 48 44 40 36 32 28 24 20 16 12 8 4
Pain Control
Agitation Control
RTS Control
n
Not Controlled (valid %)
Not Recorded (%)
Not Controlled (valid %)
Not Recorded (%)
Not Contolled (valid %)
Not Recorded (%)
41 43 53 57 68 80 93 109 124 138 156 168
15.8 11.1 14.9 3.9 17.5 13.0 17.5 12.4 11.3 9.8 12.2 8.3
7.3 16.3 11.3 10.5 7.3 13.8 14.0 11.0 14.5 11.6 16.0 28.0
13.2 5.4 12.5 5.9 16.1 15.9 17.5 16.3 15.0 16.5 14.6 15.8
7.3 10.4 9.4 10.5 8.8 13.8 14.0 10.1 13.7 12.3 16.7 28.6
6.1 16.7 12.8 5.1 13.0 3.6 11.3 24.1 19.1 22.9 21.1 23.4
19.5 30.2 26.4 31.6 32.4 30.0 33.3 27.5 28.2 23.9 26.9 33.9
RTS ⫽ respiratory tract secretions.
Vol. 21 No. 1 January 2001
Symptom Control Standards in the Last 48 Hours of Life
15
Table 4 Number of Patients With a Recording of Symptom Not Controlled and Unrecorded Observations Who Were on the ICP For At Least 48 Hours Observation Hours before death 48 44 40 36 32 28 24 20 16 12 8 4
Pain
Agitation
RTS
n
Not Controlled (valid %)
Not Recorded (%)
Not Controlled (valid %)
Not Recorded (%)
Not Controlled (valid %)
Not Recorded (%)
41 41 41 41 41 41 41 41 41 41 41 41
15.8 8.8 11.4 0.0 10.8 15.2 18.2 2.8 11.8 2.9 2.9 0.0
7.3 17.1 14.6 12.2 9.8 19.5 19.5 12.2 17.1 14.6 14.6 41.5
13.2 2.9 8.3 2.8 11.1 9.1 12.1 5.4 8.6 8.6 5.9 0.0
7.3 14.6 12.2 12.2 12.2 19.5 19.5 9.8 14.6 14.6 17.1 41.5
6.1 17.2 10.3 0.0 7.4 0.0 7.7 21.4 17.9 17.2 17.2 16.7
19.5 29.3 29.3 31.7 34.1 36.6 36.6 31.7 31.7 29.3 29.3 41.5
ICP ⫽ Integrated Care Pathways; RTS ⫽ respiratory tract secretions.
two groups: those for whom symptom was not controlled and those for whom symptom was controlled at the penultimate observation. Due to the large number of missing observations on the final observation before death, analysis for the t-test was conducted using the penultimate observations—that is, 8 hours before death. The relationship between time spent on the ICP and symptom control was examined. Results of the t-test for the three symptoms are displayed in Table 6. Patients with symptom control at the penultimate observation had higher mean numbers of observations prior to death (i.e., had spent more time on the ICP) than patients whose symptoms were not controlled. These differences were statistically significant for both pain and agitation.
The results of this study give an insight into the outcome of symptom control of dying patients in a hospice setting over the last 48 hours
of life. The symptoms of pain, agitation, and respiratory tract secretions were controlled in 54%, 48% and 55% of patients, respectively. For each symptom, approximately 80% of patients had none or only one episode of that symptom during the dying phase. Overall, there was a significant trend towards an increase in number of patients with whom pain was controlled as death approached. A number of papers have assessed symptom control during the dying phase, and although many have evaluated pain,15–19 few have looked at agitation and RTS.20 Conflicting results highlight the complexities of measuring control of these symptoms. Lichter and Hunt19 reported that 51% of patients had pain during the last 48 hours of life, which is consistent with the findings in this study. However, Turner et al.16 reported that 56% of patients had pain and 18% had agitation during the last days of life, and Ventafridda et al.20 reported that symptom control of pain was only achieved by sedation in over 50% of dying patients.
Fig. 1. Patients for whom pain was uncontrolled (n ⫽ 41).
Fig. 2. Patients for whom agitation was uncontrolled (n ⫽ 41).
Discussion
16
Ellershaw et al.
Vol. 21 No. 1 January 2001
Table 6 Comparisons At the Penultimate Observation Between Patients With Controlled or Uncontrolled Symptom Numbera of 4 hourly observations prior to death for patients in whom symptom was: Symptom Controlled Uncontrolled t -value Significance
Fig. 3. Patients for whom RTS was uncontrolled (n ⫽ 41).
The incidence in the last 48 hours of these symptoms demonstrates the need for anticipatory prescribing in care of the dying. Patients in the dying phase should be prescribed ‘as required’ medication for pain, agitation, and RTS. This would prevent possible delays in the control of symptoms, avoid unnecessary distress for patients and relatives, and in some circumstances, even prevent hospital admission. Just over half (53%) of all deaths were documented on the ICP in the hospice. The introduction of an ICP as a form of documentation within a health care setting is a ‘cultural change’ within an organization and takes time to become accepted and for staff to gain confidence in using it. We would anticipate that with increased familiarity, 70–80% of care would be documented on the ICP for the dying patient. There will continue to be some patients who are not put on the care pathway due to rapid or unexpected deterioration. Occasionally, patients have been put on the ICP for the dying patient and their condition has improved. The patient has then been taken off the ICP and appropriate documentation and care given. It is of note that in these cases the care given was appropriate for the stage of the
Table 5 Number of Patients and Number of Times Symptom Was Recorded As Uncontrolled During the Last 48 Hours of Life (n ⫽ 168) Frequencies of Symptom Not Controlled Symptom
0
1
2
3 or more
Pain 90 (53.6%) 54 (32.1%) 15 (8.9%) 9 (5.4%) Agitation 80 (47.6%) 52 (31.0%) 23 (13.7%) 13 (7.7%) RTS 93 (55.4%) 42 (25.0%) 18 (10.7%) 15 (8.9%) RTS ⫽ respiratory tract secretions.
Pain Agitation RTS
7.43 7.47 7.23
4.63 4.89 6.75
2.92 2.87 0.57
P ⬍ .01 P ⬍ .01 ns
aMean number of observations prior to death is used as a proxy measure. RTS ⫽ respiratory tract secretions.
patient’s illness and that being on the ICP was not detrimental to the patient. The average length of time on the ICP was two days, consistent with a previous study21 using the same criteria in a cancer patient population. The results of the study indicate that the entry criteria are appropriate for cancer patients; in other populations, however, these criteria may need to be modified. The number of unrecorded observations increased approximately to one-third at the final observation, which makes interpretation of the data difficult. One explanation for this result may be that the patients’ symptoms were difficult to control and treating the symptoms took priority over completing the ICP. However, this intervention would necessitate being recorded on the ICP. Therefore, it is more likely to be due to the increased activity by the nurse at the time of death in caring for the patient and supporting the patient’s family. Once the patient has died the nurse may complete the care after death section of the ICP and omit to fill in the final observation. A prompt on the ICP to complete the final assessment is to be added to the ICP in order to increase the recording of this final assessment. This is an example of the continual modification and development of the ICP to enhance the documentation of care. The analysis of data and the feedback to staff is an essential part of the implementation and continual improvement in the quality of care of the dying patient. There was a statistically significant difference in length of time on the ICP between patients for whom symptom was controlled and those for whom symptom was not controlled. This could be due to the possibility that being placed early on the pathway increases the like-
Vol. 21 No. 1 January 2001
Symptom Control Standards in the Last 48 Hours of Life
17
lihood of symptom control; alternatively, patients entered late onto the pathway may have a more rapid deterioration and therefore a more symptomatic final stage to their illness. Further research will be required to determine which of these explanations explain the relationship between duration of time on the pathway and symptom control, or whether a combination of both explanations is at work. Analysis of the ICP for the dying patient allows standards to be defined regarding symptom control in the last 48 hours of life. This is important if care of the dying is to be understood and transferred outside the world of ‘hospice care’. Benchmarking between organizations also becomes possible but any such comparisons should take into account the different patient populations and the multi-observer nature of the recordings.
4. Health Services Accreditation. Service standards for care of the dying. Battle, Sussex, England: Health Services Accreditation, 1996.
Conclusion
11. Gordon DB. Critical pathways: a road to institutionalising pain management. J Pain Symptom Manage 1996;11:252–259.
Palliative care for too long has espoused the delivery of best practice to the dying patient without this care being demonstrable and measurable. The ICP for the dying patient is a method of measuring symptom control in the dying patient and providing demonstrable standards, which are integrated into clinical practice. It also facilitates the provision and implementation of symptom control guidelines particularly in anticipatory prescribing for pain, agitation, and respiratory tract secretions. The ICP can be used as part of a continuing audit program to monitor and improve the quality of care and as part of an integrated education program in order to empower other health care professionals to care for dying patients.
References 1. Clark D. Originating a movement: Cicely Saunders and the development of St. Christopher’s Hospice, 1957–1967. Morality 1998;3:43–63. 2. Adam J. The last 48 hours. BMJ 1997;315:1600– 1603. 3. Working Party on Clinical Guidelines in Palliative Care. Changing gear—Guidelines for managing the last days of life in adults. National Council for Hospice and Specialist Palliative Care Services. Northamptomshire: Land & Unwin (Data Sciences) Ltd, 1997.
5. Twycross R. Symptom management in advanced cancer. Oxon, UK: Radcliffe Medical Press Ltd, 1997. 6. Scally G, Donaldson LJ. Clinical governance and the drive for quality improvement in the new NHS in England. BMJ 1998;317:61–65. 7. Higginson IJ, McCarthy M. Measuring symptoms in terminal cancer: are pain and dyspnoea controlled? J Royal Society Medicine 1989;82:264–267. 8. Bruera E, Kuehn N, Miller M, et al. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991;7:6–9. 9. Ellershaw JE, Boyes L, Peat S. Assessing the effectiveness of a hospital palliative care team. Palliat Med 1995;9:145–152. 10. Kitchiner D, Davidson C, Bundred P. Integrated care pathways: effective tools for continuous evaluation of clinical practice. J Eval Clin Prac 1996;2:65–69.
12. Campbell H, Hotchkiss R, Bradshaw N, Porteous M. Integrated care pathways. BMJ 1998;316:133. 13. Overill S. A practical guide to care pathways. J Integrated Care 1998;2:93–98. 14. Ellershaw J, Foster A, Murphy D, et al. Developing an integrated care pathway for the dying patient. Eur J Palliat Care 1997;4:203–207. 15. Lombard DJ, Oliver DJ. The use of opioid analgesics in the last 24 hours of life of patients with advanced cancer. Palliat Med 1989;3:27–29. 16. Turner K, Chye R, Aggarwal G, et al. Dignity in dying: A preliminary study of patients in the last three days of life. J Palliative Care 1996;12:7–13. 17. Fainsinger R, Miller MJ, Bruera E, et al. Symptom control during the last week of life on a palliative care unit. J Palliat Care 1991;7:5–11. 18. Grond S, Zech D, Schug SA, et al. Validation of World Health Organization guidelines for cancer pain relief during the last days and hours of life. J Pain Symptom Manage 1991;6:411–422. 19. Lichter I, Hunt E. The last 48 hours of life. J Palliat Care 1990;6:7–15. 20. Ventafridda V, Ripamonti C, De Conno F, et al. Symptom prevalence and control during cancer patients’ last days of life. J Palliat Care 1990;6:7–11. 21. Ellershaw JE, Sutcliffe JM, Saunders CM. Dehydration and the dying patient. J Pain Symptom Manage 1995;10:141–145.
Journal of Pain and Symptom Management
Vol. 21 No. 1 January 2001
Original Article
Care of the Dying: Setting Standards for Symptom Control in the Last 48 Hours of Life John Ellershaw, MA, FRCP, Carol Smith, RGN, BSc(Hons), Sue Overill, SRN, Sue E. Walker, RGN, DipHE(SNP), Judith Aldridge, BA(Hons)MA Marie Curie Centre Liverpool (J.E.E., C.S., S.W.), Woo lton; Royal Liverpool University Hospital (S.O.), Liverpool; and Department of Social Policy and Social Work (J.A.), University of Manchester, Manchester, United Kingdom
Abstract The hospice model of care of the dying patient is regarded as a model of excellence; however, outcomes of this care have been poorly demonstrated. Integrated Care Pathways (ICPs) provide a method of recording and measuring outcomes of care. The ICP document replaces all previous documentation and is a multiprofessional record of patient care. The aim of this study was to implement an ICP in an inpatient hospice setting in order to set standards of care for symptom control in the dying phase of a patient’s life. ICPs were analyzed from 168 inpatients who died over a one-year period. Symptoms of pain, agitation, and respiratory tract secretions (RTS) were monitored every four hours by nursing staff as either present or absent. For each symptom, 80% of patients had one episode or complete control of the symptom, 10% had two episodes, and 10% had three episodes or more recorded. As death neared, there was a statistically significant increase in the number of patients whose pain was controlled. The ICP has provided a means to measure symptom control in the dying patient and set standards of care, which is integrated into clinical practice. J Pain Symptom Manage 2001;21:12–17. © U.S. Cancer Pain Relief Committee, 2001. Key Words Palliative care, terminal care, outcome assessment (health care), pain, symptom control
Introduction The development of the modern hospice movement was stimulated by the poor quality of care of the dying patient.1 The hospice model of care is now espoused as a model of excellence and has led to a world-wide hospice movement, which aspires to deliver high quality care to dying patients not only in hospices but also in the community and hospitals.
Address reprint requests to: J.E. Ellershaw, MA, FRCP, Marie Curie Centre Liverpool, Speke Road. Woolton L25 8QA, United Kingdom. Accepted for publication: March 17, 2000. © U.S. Cancer Pain Relief Committee, 2001 Published by Elsevier, New York, New York
Although evidence-based guidelines for symptom control now exist regarding the care of the dying,2–5 little has been documented regarding the outcomes of symptom control in this population. Within health care, there is a need to measure and demonstrate the continuous improvement of the quality of patient care.6 Some outcome measures have been developed, for example the Support Team Assessment Schedule (STAS)7 , Edmonton Symptom Assessment Schedule (ESAS),8 and Palliative Care Assessment (PACA),9 but these measures do not encompass care of the dying patient. It is of increasing importance for hospice and palliative care units to demonstrate the quality 0885-3924/01/$–see front matter PII S0885-3924(00)00240-2
Vol. 21 No. 1 January 2001
Symptom Control Standards in the Last 48 Hours of Life
and outcomes of care in the context of clinical governance and resource allocation. Integrated care pathways (ICPs) are a method of implementing and monitoring best practice, and incorporating accepted guidelines and protocols into health care settings.10 The main development has been in North America, but increasingly ICPs are gaining popularity within the United Kingdom.11–13 ICPs provide a flowsheet of care, which has been locally developed by a multiprofessional team. It offers consistency in care without being prescriptive, allowing the healthcare professional to deviate from the care. The reason for the deviation is recorded and referred to as a ‘variance.’ The development of an ICP for the dying patient has previously been described.14 It includes three sections: an initial assessment, ongoing care, and care after death; with physical, psychosocial, and spiritual care contained in each section. The aim of this study was to implement the ICP for care of dying patients into clinical practice in the hospice setting to develop measurable outcomes and set standards regarding symptom control of pain, agitation, and respiratory tract secretions.
Methods Criteria for entry onto the ICP were that the multidisciplinary team agreed that the patient was dying and had at least two of the following: bedbound; semi-comatose; only able to take sips of fluid; no longer able to take tablets. Data from patients placed on the ICP who died in the hospice from February 1997 to February 1998 were analyzed, including diagnosis, gender, and age. As part of the ongoing assessment, observations for the control of the symptoms of pain, agitation, and respiratory tract secretions were monitored every four hours by nursing staff within the hospice. The observations for each symptom were categorized as either symptom present—which was marked as a ‘V’ denoting a variance (i.e., symptom not controlled)—or marked as ‘A’—denoting achieved (i.e., symptom controlled). For example, if the patient had pain at 12.00 hours this was recorded as ‘V’, and if the patient was pain-free at 16.00 hours this was recorded as ‘A’. Due to the subjective nature of the recording, prompts sup-
13
porting each goal are contained in the ICP in order to reduce observer bias.
Results Data were collected from 168 inpatients placed on the ICP for the dying patient who died at the hospice over a 13-month period from February 1997 to February 1998. This represents 53% of the total number of deaths over that period. Table 1 displays the demographic characteristics of the hospice patients. Table 2 displays the frequency distribution of number of days patients were on the ICP prior to death. Just under half of the patients remained on the ICP for 2 days or less prior to death. The mean and modal number of days on the ICP was 2 (SD ⫽ 1.38). Symptom observations of pain, agitation and respiratory tract secretions (RTS) recorded during the last 48 hours of life were analyzed for the frequency of symptom control. Table 3 displays the percentages of recorded uncontrolled symptoms and unrecorded observations for the three symptoms during the last 48 hours of life. Unrecorded observations were those not carried out by nursing staff. Across all three symptoms, unrecorded observations were highest on the final observation prior to death, with roughly one third of patients having no symptom observation recorded in the four hours before death. Unrecorded observations were highest for RTS, and roughly similar for pain and agitation. Recordings of uncontrolled symptoms during the last 48 hours of life (across all observations) were highest for RTS at 139 (17.3% of all observations), followed by agitation at 127 (13.4% of all observations), and then pain at 115 (12% of all observations). Thus, symptom control while on the ICP was achieved for 85% or more of patients, averaging across all observations.
Table 1 Demographic Characteristics of Patients Who Were on the ICP (n ⫽ 168) Male Female Mean age (years) Range Most frequent diagnosis: Lung cancer Breast cancer ICP ⫽ Integrated Care Pathways.
81 87 67 27–89 48 (28.1%) 21 (12.3%)
14
Ellershaw et al.
Table 2 Frequency Distribution of Number of Days Patients Were on ICP Days on ICP
n
%
1 2 3 4 5 6 7 8
41 74 26 15 6 1 3 2
24.4 44.0 15.5 8.9 3.6 0.6 1.8 1.2
ICP ⫽ Integrated Care Pathways.
Table 4 shows the percentages of symptoms not controlled for the 41 patients who were on the ICP for at least 48 hours or more. Recordings for uncontrolled symptoms during the last 48 hours of life (across all observations) were highest for RTS at 39 (13.1% of all observations), followed by pain at 35 (9.4% of all observations), and then agitation at 31 (8.1% of all observations). Percentages of uncontrolled symptoms for pain agitation and RTS are also graphically displayed in Figures 1, 2, and 3, which illustrate the trends shown in Table 4. The frequency of the 168 patients with none, one, two, and three or more recordings for uncontrolled symptoms during the last 48 hours of life are displayed in Table 5. In approximately 50% of patients, each symptom was controlled, 30% had one uncontrolled episode recorded and just over 10% had two episodes recorded,
Vol. 21 No. 1 January 2001
and fewer than 10% had three or more episodes of each symptom not controlled during the last 48 hours of life. Figures 1 and 2 display the trend line for the number of patients on the ICP for at least 48 hours with recorded observations of pain and agitation during the last 48 hours of life. It shows that as death neared fewer patients had episodes of pain or agitation. Figure 3 represents the percentages of patients for whom control of RTS was recorded as symptom uncontrolled during the last 48 hours of life. The trend line applied to the graph suggests a marked increase in the number of patients displaying signs of this symptom nearing death, particularly during the last 20 hours of life. McNemar’s test was used to compare the period covering hours 40–48 with hours 8–12 to see whether there had been any significant change in uncontrolled symptom between the two periods (uncontrolled symptom defined as uncontrolled symptom recorded at any observation point during the period). The test was used to compare the two periods to see whether there had been a significant increase or decrease in the number of patients with a symptom not controlled recording in the two periods. The only change which was statistically significant (P ⫽ 0.031) was for pain recordings, which decreased significantly. The changes for agitation and RTS were not significant. An independent t-test compared mean number of observations prior to death (used as a proxy measure for time spent on ICP) between
Table 3 Number of Patients With a Recording of Symptom Not Controlled and Unrecorded Observations During the Last 48 Hours of Life Observation Hours before death 48 44 40 36 32 28 24 20 16 12 8 4
Pain Control
Agitation Control
RTS Control
n
Not Controlled (valid %)
Not Recorded (%)
Not Controlled (valid %)
Not Recorded (%)
Not Contolled (valid %)
Not Recorded (%)
41 43 53 57 68 80 93 109 124 138 156 168
15.8 11.1 14.9 3.9 17.5 13.0 17.5 12.4 11.3 9.8 12.2 8.3
7.3 16.3 11.3 10.5 7.3 13.8 14.0 11.0 14.5 11.6 16.0 28.0
13.2 5.4 12.5 5.9 16.1 15.9 17.5 16.3 15.0 16.5 14.6 15.8
7.3 10.4 9.4 10.5 8.8 13.8 14.0 10.1 13.7 12.3 16.7 28.6
6.1 16.7 12.8 5.1 13.0 3.6 11.3 24.1 19.1 22.9 21.1 23.4
19.5 30.2 26.4 31.6 32.4 30.0 33.3 27.5 28.2 23.9 26.9 33.9
RTS ⫽ respiratory tract secretions.
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Symptom Control Standards in the Last 48 Hours of Life
15
Table 4 Number of Patients With a Recording of Symptom Not Controlled and Unrecorded Observations Who Were on the ICP For At Least 48 Hours Observation Hours before death 48 44 40 36 32 28 24 20 16 12 8 4
Pain
Agitation
RTS
n
Not Controlled (valid %)
Not Recorded (%)
Not Controlled (valid %)
Not Recorded (%)
Not Controlled (valid %)
Not Recorded (%)
41 41 41 41 41 41 41 41 41 41 41 41
15.8 8.8 11.4 0.0 10.8 15.2 18.2 2.8 11.8 2.9 2.9 0.0
7.3 17.1 14.6 12.2 9.8 19.5 19.5 12.2 17.1 14.6 14.6 41.5
13.2 2.9 8.3 2.8 11.1 9.1 12.1 5.4 8.6 8.6 5.9 0.0
7.3 14.6 12.2 12.2 12.2 19.5 19.5 9.8 14.6 14.6 17.1 41.5
6.1 17.2 10.3 0.0 7.4 0.0 7.7 21.4 17.9 17.2 17.2 16.7
19.5 29.3 29.3 31.7 34.1 36.6 36.6 31.7 31.7 29.3 29.3 41.5
ICP ⫽ Integrated Care Pathways; RTS ⫽ respiratory tract secretions.
two groups: those for whom symptom was not controlled and those for whom symptom was controlled at the penultimate observation. Due to the large number of missing observations on the final observation before death, analysis for the t-test was conducted using the penultimate observations—that is, 8 hours before death. The relationship between time spent on the ICP and symptom control was examined. Results of the t-test for the three symptoms are displayed in Table 6. Patients with symptom control at the penultimate observation had higher mean numbers of observations prior to death (i.e., had spent more time on the ICP) than patients whose symptoms were not controlled. These differences were statistically significant for both pain and agitation.
The results of this study give an insight into the outcome of symptom control of dying patients in a hospice setting over the last 48 hours
of life. The symptoms of pain, agitation, and respiratory tract secretions were controlled in 54%, 48% and 55% of patients, respectively. For each symptom, approximately 80% of patients had none or only one episode of that symptom during the dying phase. Overall, there was a significant trend towards an increase in number of patients with whom pain was controlled as death approached. A number of papers have assessed symptom control during the dying phase, and although many have evaluated pain,15–19 few have looked at agitation and RTS.20 Conflicting results highlight the complexities of measuring control of these symptoms. Lichter and Hunt19 reported that 51% of patients had pain during the last 48 hours of life, which is consistent with the findings in this study. However, Turner et al.16 reported that 56% of patients had pain and 18% had agitation during the last days of life, and Ventafridda et al.20 reported that symptom control of pain was only achieved by sedation in over 50% of dying patients.
Fig. 1. Patients for whom pain was uncontrolled (n ⫽ 41).
Fig. 2. Patients for whom agitation was uncontrolled (n ⫽ 41).
Discussion
16
Ellershaw et al.
Vol. 21 No. 1 January 2001
Table 6 Comparisons At the Penultimate Observation Between Patients With Controlled or Uncontrolled Symptom Numbera of 4 hourly observations prior to death for patients in whom symptom was: Symptom Controlled Uncontrolled t -value Significance
Fig. 3. Patients for whom RTS was uncontrolled (n ⫽ 41).
The incidence in the last 48 hours of these symptoms demonstrates the need for anticipatory prescribing in care of the dying. Patients in the dying phase should be prescribed ‘as required’ medication for pain, agitation, and RTS. This would prevent possible delays in the control of symptoms, avoid unnecessary distress for patients and relatives, and in some circumstances, even prevent hospital admission. Just over half (53%) of all deaths were documented on the ICP in the hospice. The introduction of an ICP as a form of documentation within a health care setting is a ‘cultural change’ within an organization and takes time to become accepted and for staff to gain confidence in using it. We would anticipate that with increased familiarity, 70–80% of care would be documented on the ICP for the dying patient. There will continue to be some patients who are not put on the care pathway due to rapid or unexpected deterioration. Occasionally, patients have been put on the ICP for the dying patient and their condition has improved. The patient has then been taken off the ICP and appropriate documentation and care given. It is of note that in these cases the care given was appropriate for the stage of the
Table 5 Number of Patients and Number of Times Symptom Was Recorded As Uncontrolled During the Last 48 Hours of Life (n ⫽ 168) Frequencies of Symptom Not Controlled Symptom
0
1
2
3 or more
Pain 90 (53.6%) 54 (32.1%) 15 (8.9%) 9 (5.4%) Agitation 80 (47.6%) 52 (31.0%) 23 (13.7%) 13 (7.7%) RTS 93 (55.4%) 42 (25.0%) 18 (10.7%) 15 (8.9%) RTS ⫽ respiratory tract secretions.
Pain Agitation RTS
7.43 7.47 7.23
4.63 4.89 6.75
2.92 2.87 0.57
P ⬍ .01 P ⬍ .01 ns
aMean number of observations prior to death is used as a proxy measure. RTS ⫽ respiratory tract secretions.
patient’s illness and that being on the ICP was not detrimental to the patient. The average length of time on the ICP was two days, consistent with a previous study21 using the same criteria in a cancer patient population. The results of the study indicate that the entry criteria are appropriate for cancer patients; in other populations, however, these criteria may need to be modified. The number of unrecorded observations increased approximately to one-third at the final observation, which makes interpretation of the data difficult. One explanation for this result may be that the patients’ symptoms were difficult to control and treating the symptoms took priority over completing the ICP. However, this intervention would necessitate being recorded on the ICP. Therefore, it is more likely to be due to the increased activity by the nurse at the time of death in caring for the patient and supporting the patient’s family. Once the patient has died the nurse may complete the care after death section of the ICP and omit to fill in the final observation. A prompt on the ICP to complete the final assessment is to be added to the ICP in order to increase the recording of this final assessment. This is an example of the continual modification and development of the ICP to enhance the documentation of care. The analysis of data and the feedback to staff is an essential part of the implementation and continual improvement in the quality of care of the dying patient. There was a statistically significant difference in length of time on the ICP between patients for whom symptom was controlled and those for whom symptom was not controlled. This could be due to the possibility that being placed early on the pathway increases the like-
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Symptom Control Standards in the Last 48 Hours of Life
17
lihood of symptom control; alternatively, patients entered late onto the pathway may have a more rapid deterioration and therefore a more symptomatic final stage to their illness. Further research will be required to determine which of these explanations explain the relationship between duration of time on the pathway and symptom control, or whether a combination of both explanations is at work. Analysis of the ICP for the dying patient allows standards to be defined regarding symptom control in the last 48 hours of life. This is important if care of the dying is to be understood and transferred outside the world of ‘hospice care’. Benchmarking between organizations also becomes possible but any such comparisons should take into account the different patient populations and the multi-observer nature of the recordings.
4. Health Services Accreditation. Service standards for care of the dying. Battle, Sussex, England: Health Services Accreditation, 1996.
Conclusion
11. Gordon DB. Critical pathways: a road to institutionalising pain management. J Pain Symptom Manage 1996;11:252–259.
Palliative care for too long has espoused the delivery of best practice to the dying patient without this care being demonstrable and measurable. The ICP for the dying patient is a method of measuring symptom control in the dying patient and providing demonstrable standards, which are integrated into clinical practice. It also facilitates the provision and implementation of symptom control guidelines particularly in anticipatory prescribing for pain, agitation, and respiratory tract secretions. The ICP can be used as part of a continuing audit program to monitor and improve the quality of care and as part of an integrated education program in order to empower other health care professionals to care for dying patients.
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