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Comfort care in burns: The Burn Modified Liverpool Care Pathway (BM-LCP)
burns 37 (2011) 981–985
available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/burns
Comfort care in burns: The Burn Modified Liverpool Care Pathway (BM-LCP) S.J. Hemington-Gorse *, A.J.P. Clover, C. Macdonald, J. Harriott, P. Richardson, B. Philp, O. Shelley, P. Dziewulski St Andrew’s Centre for Burns, Broomfield Hospital, Court Road, Chelmsford CM1 7ET, United Kingdom
article info
abstract
Article history:
Introduction: Despite advances in burn care some injuries remain non survivable. Good end
Accepted 21 March 2011
of life care for these patients is arguably as important as life prolonging care. The Liverpool Care Pathway is a useful tool for providing good quality end of life care. It has previously
Keywords:
been modified for the acute setting. We modified it further specifically for use in burn care in
Comfort care
2007 and would like to share our experience of using it.
End of life care
Methods: A retrospective case series of deaths occurring between 01/01/08 and 31/12/09 is
Liverpool Care Pathway
presented and adherence to the Burn Modified Liverpool Care Pathway (BM-LCP) is assessed. Results: There were 22 deaths over the study period with a mean TBSA of 55%. Mean Acute Burn Severity Index score (ABSI) 12.5. A decision of futility was made in 14 cases, 11 of these were started on the BM-LCP. 7 were started on the pathway at the time of admission. Mean time from decision to start the pathway to death 11 h (range 3–48). There were no variances from the pathway. Conclusion: The BM-LCP appears to be an appropriate tool for assisting in end of life care in burns and when used appears to improve end of life care. We recommend its use and would encourage others to implement its use. # 2011 Elsevier Ltd and ISBI. All rights reserved.
1.
Introduction
Over the last few decades advances in burn care and intensive care medicine have led to improvements in survival following burn injury. Despite this there are still patients in whom the ultimate outcome will be death. Some non survivors may be obvious from the outset. In others however, a decision of futility needs to be made during the course of treatment when it becomes apparent that despite best efforts the patient fails to respond to treatment. The importance of improving end of life care has been recognized by the Department of Health [1] and the General Medical Council [2]. Both have issued guidance aiming to
standardize end of life care and improve its delivery. The process of death and the care of the dying patient is potentially highly emotive not only for the patient and their family but also for the health professionals involved in treatment. This can be reduced through the delivery of quality end of life care. Discussions addressing the impending end of life and the potential non response to treatment can be difficult and as a result may be poorly delivered. The perception that death is a result of medical failure is common amongst the medical profession who may fail to see that good end of life care can be a positive experience, particularly for the family of the deceased. Much of the research into end of life care has been carried out in the hospice setting and concentrates specifically on
* Corresponding author at: Welsh Centre for Burns and Plastic Surgery, Morriston Hospital, Swansea SA6 6NL, United Kingdom. Tel.: +44 1792 702222. E-mail address: [email protected] (S.J. Hemington-Gorse). 0305-4179/$36.00 # 2011 Elsevier Ltd and ISBI. All rights reserved. doi:10.1016/j.burns.2011.03.012
982
burns 37 (2011) 981–985
those dying from end stage metastatic or chronic disease [2–7]. This has led to an improved understanding of what constitutes a ‘‘good death’’ and the factors that are important in terminal care. In the United Kingdom, this has led to the development of the Liverpool Care Pathway (LCP) which enables hospice type care to be delivered in a non hospice setting [8,9]. The LCP has been recently modified for use in the acute setting for patients in the last few days of life [10]. Given the improvements seen when the LCP is in use [8,11] it seems sensible to extend its use to the clinical setting where death may occur rapidly (over a number of hours). It has been successfully modified and used in the accident and emergency setting with positive results [12]. End of life care in burn injured patients is as important as it is in other settings, consequently we sought to modify the LCP for use in burns. This was introduced at the St Andrew’s Centre for Burns in 2007 and was well received by medical and nursing staff. This led to an improved perception of dying in our unit.
2.
The BM-LCP
The LCP is divided into initial assessment (section 1), ongoing care (section 2) and after death care. An overview of the BM-LCP is given in Fig. 1. Section 1 aims to ensure that adequate consideration has been given to patient care, including alleviation of physical symptoms such as nausea, pain and agitation. It also addresses spiritual aspects of care including religious, patient and family communication. This initial assessment ensures that care has been rationalized where possible to avoid unnecessary investigations and interventions (see Appendix 1 for full version). In adapting the pathway we have made a number of additions and subtle changes which make it more appropriate for burn patients. These include an additional sub section suggesting removal of lines and tubes, such as nasogastric tubes and arterial lines that are non essential. Medications in the standard LCP are given via the subcutaneous route, since this is unpredictable in burns over 20% these are given intravenously whenever possible. Nursing interventions have been adjusted to address the burn wound itself ensuring that dressings are replaced for odour control, comfort and dignity. Section 2, covering measures required for comfort care, aims to record observations 4 hourly unless closer observation is warranted due to changes in condition. More regular assessments have the potential to interrupt time for the families to be together and disrupt grieving. Obviously nursing staff are on hand, able to attend at the family’s request at any time, comfort goals are recorded as being achieved (A) or at variance (V). If there is variance, attempts are made to modify care to achieve comfort. Appendix 2 contains the full version. The administration after death is important and this is dealt with in the final section of the pathway. Smooth and prompt administration post death minimizes distress to the patient’s relatives. This includes reminders to contact the coroner’s office and family physician. This section is essentially unchanged from the original LCP.
This study aims to introduce the reader to the BM-LCP and shares our early experience of its use at the St Andrew’s Centre for Burns.
3.
Methods
Approval was obtained from the audit department to assess compliance to the BM-LCP and end of life protocol. All deaths occurring between 1st January 2008 and 31st December 2009 were identified. Both paper notes and electronic patient records stored on the MetavisionTM were reviewed. The primary objective was to assess adherence to the BMLCP and to assess any variance from the pathway. Clear evidence of an end of life plan and instigation of the BM-LCP was sought in the records. Notes were also checked for who made the decision of futility, whether this was documented adequately and the time from this decision to death. Basic demographic data was also collected along with mechanism of injury, % total body surface area (TBSA) burn, date of admission and date of death. The ABSI was calculated for each patient based upon the following factors; age, sex, %TBSA burn, inhalation injury and the presence of full thickness burn. Each variable has been assigned a numerical value which varies according to injury severity and the sum of these variables is used to predict mortality [13].
4.
Results
32 deaths occurred during the 2 year study period after the implementation of the BM-LCP. 10 patients were excluded from analysis; 4 were non burn patients, 2 died elsewhere and 4 sets of notes were not available for review. The remaining 22 deaths were included for analysis. Patient’s age ranged from 21–76 years. The mean %TBSA was 55% (range 9–95%). The mean ABSI score was 12.5. There were 15 men and 7 women. The most common mechanism of injury was flame (18/22), notably 8 of the 18 recorded flame burns were episodes of self immolation, the remainder of deaths were due to scalds (3/22) and electrical injuries (1/22) (Table 1). Death was unexpected in 8 patients. In this group full active treatment was continued until the time of death. In the remaining 14 patients a clear decision of futility was documented. 11 of these patients were started on the BMLCP. In the other 3 patients a decision of futility was made per death when it became apparent that despite maximal treatment death was inevitable. This precluded starting them on the BM-LCP. 14/14 decisions of futility were made by the burns multidisciplinary team (consultant surgeon, consultant burns anaesthetist, senior nursing staff and therapists). Adherence to the BM-LCP was well documented with no recorded variance from the goals set out by the pathway suggesting that the modifications made to the pathway were indeed appropriate for our patient group. 7 patients were started on the BM-LCP on admission as their injuries were deemed to be unsurvivable. All of these rapidly succumbed to their injury. The mean time from instigation of the BM-LCP to death was
983
burns 37 (2011) 981–985
[()TD$FIG] Review decision and discuss with MDT
Decision of fulity made by MDT
No
Yes
Conduct Inial Assessment Connue Care
Secon 1, Goals 1 -11
Re evaluate goals every 48 Hours
Adjust Care Record Adjustment
4 Hourly Assessment Pain Free? Not Agitated? Not Breathless? Mouth care?
Not troubled by Secreons? No Nausea or Voming? Wound Care Adequate? Medicaon given as planned?
Yes
No
12 Hourly Assessment Pressure Care? Wound Care?
Psychological Support? Family Support?
Care Aer Death GP Contact? Religious needs addressed? Paperwork completed?
Coroner Contact? Family Discussion? Valuables and Belongings?
Fig. 1 – Decision summarising pathway.
11 h (range 3–48 h). In all cases the family/next of kin were made aware of the pathway and understood its goals.
5.
Discussion
It is inevitable that, despite advances in burn treatment, death will be the outcome for some burn victims. Prediction of poor outcome and recognizing the point of futility remains a challenge [13–19] but should remain a priority as quality end of life care is arguably as important as life sustaining care. The concept of a ‘‘good’’ death is important. The dying should be treated with respect and dignity, should be without
pain and distressing symptoms and should be in the company of close family and/or friends [1]. The LCP is widely acknowledged to improve end of life care by standardizing actions and increasing the confidence of care givers when dealing with a dying patient as it supports problem anticipation and promotes proactive management of comfort [8,9,12]. Its use as an audit tool to improve care delivery is also recognized. The LCP provides education and feedback to professionals involved in terminal care and identifies room for improvement by highlighting areas where goals have not been attained [20]. LCP delivered care also has an effect on relatives as levels of bereavement are statistically significantly lower in relatives of those treated by the LCP when compared to those not treated
984
burns 37 (2011) 981–985
Table 1 – Patient demographics.
1 2 3 4 5 6 7 8 9 10 11 a
Age
% TSBA
Mechanism
55 75 82 72 73 30 49 65 28 25 30
84 43 15 55 60 80 95 2a 95 95 95
Self immolation Scald Flame Flame Flame Self immolation Flame Scald Electrical Flame self immolation
Decision of futility?
By whom?
Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes
MDT MDT MDT MDT MDT MDT MDT MDT MDT MDT MDT
Time from start LCP-death (h) 5.5 1.25 18 12 6.5 10 0.25 48 5 16 3
Variance from BM-LCP NO NO NO NO NO NO NO NO NO NO NO
ABSI 14 11 10 13 13 12 15 7 14 14 14
Widespread metastatic disease, for palliative care only.
with the LCP. Patient comfort is increased and symptom burden reduced by attainment of goals, this has been supported by improvements in relatives perception of symptom improvement [21]. The legal aspects of providing end of life care are complex and multifaceted. It is essential that staff involved in care are fully educated regarding issues such as consent, best interest and mental capacity [2]. It is vital that the emphasis for end of life care focuses on improving the final days and hours for the patient, it should not be viewed as a means to shorten life nor hasten death. The LCP came under media criticism for this when it was introduced [22]. In response to this further audit work was carried out across the NHS which concluded that the LCP improved care and was not detrimental in any way to the patient [22]. The concept of comfort care in burns is not new. Watchel et al. in 1987 [16] published a guide for comfort care based upon attainment of 12 goals which encompasses many of the goals raised by the LCP. They emphasis that a decision to engage in comfort care does not mean no care but should be viewed as a change in goals. The goal, rather than prolonging life, is to enhance the quality of remaining life. We feel that the modifications made to the LCP to adapt its use in burns addresses these goals and works towards the same end point. The layout of the LCP provides an easy to follow framework to ensure that these goals are reached. The BM-LCP is being appropriately used within our department and appears to be achieving its goal. The decision of futility will always be difficult in some cases. This decision should not be the responsibility of a sole clinician but a multi disciplinary discussion following a full and frank debate regarding the patient’s clinical course and likely outcome between clinicians and including the family. This decision must be clearly documented and should be reviewed if the clinical condition changes [23]. In our opinion using the BMLCP in a timely manner improves the end of life experience for patients and, from the limited feedback we have been given, also for their relatives. Unfortunately we do not have any formal evaluation of the BM-LCP from relatives although this is something we plan to collect in the future as the BM-LCP is further evaluated. Staff on the unit feel more at ease with the concept of impending death and are more confident treating dying patients when treatment goals are clearly defined. Our nursing staff unanimously support the use of the pathway.
Ongoing support and education for staff once the pathway has been introduced has been identified as being pivotal to successful implementation of any type of LCP [24]. Prior to it being introduced educational sessions were run to ensure that all nursing and medical staff were aware of the pathway. Refresher sessions are available if we have an intake of new staff. The modifications made to the pathway are appropriate and further modifications unnecessary at present as all goals were attained with no variance. All of the modifications made to the original LCP were made after lengthy discussion within our unit regarding priorities in treating a patient dying from their burn injury. We believe the efficacy of these changes is proven by 100% adherence to the goals with no additional concerns regarding treatment being raised by members of the MDT following the introduction of the pathway. We are, however, always prepared to make changes should the need arise as believe that the care offered to the patients must be flexible to continue to provide the best experience for patients and their families. The BM-LCP is only used for adult patients; we do not have a pathway for children at this time. It is our intention to re-audit our experience of the BM-LCP on a regular basis and we hope that it will become a useful tool in other units throughout the UK and beyond. We would very much like to extend data collection across a wider number of units. With an increased population base it would be very interesting to collect data regarding the experience of care givers and relatives for patients treated according to the BMLCP. This data would hopefully, in the long-term, provide evidence to allow us to compare the experience of death in the acute setting with that in the hospice and cancer setting and assist us in attempting to minimize the trauma of death and the grief response for relatives.
6.
Conclusion
There is an encouraging trend towards recognizing the importance of end of life care, driven perhaps by End of Life strategy published in 2007 [1]. The LCP seems to be gaining recognition within the acute hospital setting as a useful treatment guide but taken in its unmodified form does not address all aspects of burn care in burn related deaths. The BM-LCP is the first example of a specific end of life pathway for use in burns patients. Our experience is that it is easy to
burns 37 (2011) 981–985
adhere to and is well received by the staff using it. Consequently, we recommend it to the burn community both to improve care and to standardize end of life care in burns patients throughout the UK and beyond.
Conflict of interest There is no conflict of interest to declare.
references [1] Richards M. The end of life care strategy. London: Department of Health; 2008, www.dh.gov.uk/en/ Healthcare/IntegratedCare/Endoflifecare/index.htm. [2] Treatment and care towards the end of life: good practice in decision making. General Medical Council; 2010, www.gmc-uk.org/End_of_life.pdf-32486688.pdf. [3] Saunders C. The evolution of palliative care. Patient Educ Couns 2000;41:7–13. [4] Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA 1999;281:163–8. [5] Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a good death: observations of patients, families and providers. Ann Intern Med 2000;132:825–32. [6] Emanuel EJ, Emanuel LL. The promise of a good death. Lancet 1998;(Suppl. 2):SII21–9. [7] Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ 2003;326:30–4. [8] Veerbeek L, van Zuylen L, Swart SJ, van der Maas P, de Vogel-Voogt E, van der Rijt CCD, et al. The effect of the Liverpool Care Pathway for the dying: a multi-centre study. Palliat Med 2008;22:145–51. [9] Ellershaw JE, Foster A, Murphy D. Developing an integrated pathway for the dying patient. Eur J Palliat Care 1997;4: 203–7. [10] Ellershaw JE. Care of the dying: what a difference an LCP means! Palliat Med 2007;21:365–8.
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[11] Swart SJ, van Veluw H, van Zuylen L, Gambles M, Ellershaw JE. Dutch experiences with the Liverpool Care Pathway. Eur J Palliat Care 2006;13:156–9. [12] Paterson BC, Duncan R, Conway R, Paterson FM, Napier P, Raitt M. Introduction of the Liverpool Care Pathway for end of life care to emergency medicine. Emerg Med J 2009;26:777–9. [13] Tobiasen J, Hiebert JM, Edlich RF. The abbreviated burn severity index. Annals Emerg Med 1982;11:260–2. [14] Civetta JM. Beyond technology: intensive care in the 1980s. Crit Care Med 1981;9:763. [15] Fratianne RB, Brandt CP. Determining when care for burns is futile. J Burn Care Rehabil 1997;18:262–7. [16] Wachtel TL, Frank HA, Nielsen JA. Comfort care: an alternative treatment programme for seriously burned patients. Burns 1987;13(1):1–6. [17] Godwin Y, Wood SH. Major burns in Cape Town: a modified burns score for patient triage. Burns 1998;24:58–63. [18] Ryan CM, Schoenfeld DA, Thorpe WP, Sheridan RL, Cassem EH, Tompkins RG. Objective estimates of the probability of death from burn injuries. N Engl J Med 1998;338:362–6. [19] The Belgian Outcome in Burn Injury Study Group. Development and validation of a model for prediction of mortality in patients with acute burn injury. Brit J Surg 2009;96:111–7. [20] Ellershaw JE, Murphy D. The Liverpool Care Pathway (LCP) influencing the UK national agenda on care of the dying. Int J Palliat Nurs 2005;11:132–4. [21] Veerbeek L, van der Heide A, de Vogel-Voogt E, de Bakker R, van der Rijt CCD, Swart SJ, et al. Using the LCP: bereaved relatives’ assessments of communication and bereavement. Am J Hospice Palliat Med 2008;25(3):207–14. [22] http://www.telegraph.co.uk/health/healthnews/6127514/ Sentenced-to-death-on-the-NHS.html. [23] Ismail A, Long J, Moiemen N, Wilson Y. End of life decisions and care of the adult burn patient. Burns )2010;(November) [Epub ahead of print]. [24] Walker R, Read S. The Liverpool Care Pathway in intensive care: an exploratory study of doctor and nurse perceptions. Int J Palliat Nurs 2010;16(6):267–73.
available at www.sciencedirect.com
journal homepage: www.elsevier.com/locate/burns
Comfort care in burns: The Burn Modified Liverpool Care Pathway (BM-LCP) S.J. Hemington-Gorse *, A.J.P. Clover, C. Macdonald, J. Harriott, P. Richardson, B. Philp, O. Shelley, P. Dziewulski St Andrew’s Centre for Burns, Broomfield Hospital, Court Road, Chelmsford CM1 7ET, United Kingdom
article info
abstract
Article history:
Introduction: Despite advances in burn care some injuries remain non survivable. Good end
Accepted 21 March 2011
of life care for these patients is arguably as important as life prolonging care. The Liverpool Care Pathway is a useful tool for providing good quality end of life care. It has previously
Keywords:
been modified for the acute setting. We modified it further specifically for use in burn care in
Comfort care
2007 and would like to share our experience of using it.
End of life care
Methods: A retrospective case series of deaths occurring between 01/01/08 and 31/12/09 is
Liverpool Care Pathway
presented and adherence to the Burn Modified Liverpool Care Pathway (BM-LCP) is assessed. Results: There were 22 deaths over the study period with a mean TBSA of 55%. Mean Acute Burn Severity Index score (ABSI) 12.5. A decision of futility was made in 14 cases, 11 of these were started on the BM-LCP. 7 were started on the pathway at the time of admission. Mean time from decision to start the pathway to death 11 h (range 3–48). There were no variances from the pathway. Conclusion: The BM-LCP appears to be an appropriate tool for assisting in end of life care in burns and when used appears to improve end of life care. We recommend its use and would encourage others to implement its use. # 2011 Elsevier Ltd and ISBI. All rights reserved.
1.
Introduction
Over the last few decades advances in burn care and intensive care medicine have led to improvements in survival following burn injury. Despite this there are still patients in whom the ultimate outcome will be death. Some non survivors may be obvious from the outset. In others however, a decision of futility needs to be made during the course of treatment when it becomes apparent that despite best efforts the patient fails to respond to treatment. The importance of improving end of life care has been recognized by the Department of Health [1] and the General Medical Council [2]. Both have issued guidance aiming to
standardize end of life care and improve its delivery. The process of death and the care of the dying patient is potentially highly emotive not only for the patient and their family but also for the health professionals involved in treatment. This can be reduced through the delivery of quality end of life care. Discussions addressing the impending end of life and the potential non response to treatment can be difficult and as a result may be poorly delivered. The perception that death is a result of medical failure is common amongst the medical profession who may fail to see that good end of life care can be a positive experience, particularly for the family of the deceased. Much of the research into end of life care has been carried out in the hospice setting and concentrates specifically on
* Corresponding author at: Welsh Centre for Burns and Plastic Surgery, Morriston Hospital, Swansea SA6 6NL, United Kingdom. Tel.: +44 1792 702222. E-mail address: [email protected] (S.J. Hemington-Gorse). 0305-4179/$36.00 # 2011 Elsevier Ltd and ISBI. All rights reserved. doi:10.1016/j.burns.2011.03.012
982
burns 37 (2011) 981–985
those dying from end stage metastatic or chronic disease [2–7]. This has led to an improved understanding of what constitutes a ‘‘good death’’ and the factors that are important in terminal care. In the United Kingdom, this has led to the development of the Liverpool Care Pathway (LCP) which enables hospice type care to be delivered in a non hospice setting [8,9]. The LCP has been recently modified for use in the acute setting for patients in the last few days of life [10]. Given the improvements seen when the LCP is in use [8,11] it seems sensible to extend its use to the clinical setting where death may occur rapidly (over a number of hours). It has been successfully modified and used in the accident and emergency setting with positive results [12]. End of life care in burn injured patients is as important as it is in other settings, consequently we sought to modify the LCP for use in burns. This was introduced at the St Andrew’s Centre for Burns in 2007 and was well received by medical and nursing staff. This led to an improved perception of dying in our unit.
2.
The BM-LCP
The LCP is divided into initial assessment (section 1), ongoing care (section 2) and after death care. An overview of the BM-LCP is given in Fig. 1. Section 1 aims to ensure that adequate consideration has been given to patient care, including alleviation of physical symptoms such as nausea, pain and agitation. It also addresses spiritual aspects of care including religious, patient and family communication. This initial assessment ensures that care has been rationalized where possible to avoid unnecessary investigations and interventions (see Appendix 1 for full version). In adapting the pathway we have made a number of additions and subtle changes which make it more appropriate for burn patients. These include an additional sub section suggesting removal of lines and tubes, such as nasogastric tubes and arterial lines that are non essential. Medications in the standard LCP are given via the subcutaneous route, since this is unpredictable in burns over 20% these are given intravenously whenever possible. Nursing interventions have been adjusted to address the burn wound itself ensuring that dressings are replaced for odour control, comfort and dignity. Section 2, covering measures required for comfort care, aims to record observations 4 hourly unless closer observation is warranted due to changes in condition. More regular assessments have the potential to interrupt time for the families to be together and disrupt grieving. Obviously nursing staff are on hand, able to attend at the family’s request at any time, comfort goals are recorded as being achieved (A) or at variance (V). If there is variance, attempts are made to modify care to achieve comfort. Appendix 2 contains the full version. The administration after death is important and this is dealt with in the final section of the pathway. Smooth and prompt administration post death minimizes distress to the patient’s relatives. This includes reminders to contact the coroner’s office and family physician. This section is essentially unchanged from the original LCP.
This study aims to introduce the reader to the BM-LCP and shares our early experience of its use at the St Andrew’s Centre for Burns.
3.
Methods
Approval was obtained from the audit department to assess compliance to the BM-LCP and end of life protocol. All deaths occurring between 1st January 2008 and 31st December 2009 were identified. Both paper notes and electronic patient records stored on the MetavisionTM were reviewed. The primary objective was to assess adherence to the BMLCP and to assess any variance from the pathway. Clear evidence of an end of life plan and instigation of the BM-LCP was sought in the records. Notes were also checked for who made the decision of futility, whether this was documented adequately and the time from this decision to death. Basic demographic data was also collected along with mechanism of injury, % total body surface area (TBSA) burn, date of admission and date of death. The ABSI was calculated for each patient based upon the following factors; age, sex, %TBSA burn, inhalation injury and the presence of full thickness burn. Each variable has been assigned a numerical value which varies according to injury severity and the sum of these variables is used to predict mortality [13].
4.
Results
32 deaths occurred during the 2 year study period after the implementation of the BM-LCP. 10 patients were excluded from analysis; 4 were non burn patients, 2 died elsewhere and 4 sets of notes were not available for review. The remaining 22 deaths were included for analysis. Patient’s age ranged from 21–76 years. The mean %TBSA was 55% (range 9–95%). The mean ABSI score was 12.5. There were 15 men and 7 women. The most common mechanism of injury was flame (18/22), notably 8 of the 18 recorded flame burns were episodes of self immolation, the remainder of deaths were due to scalds (3/22) and electrical injuries (1/22) (Table 1). Death was unexpected in 8 patients. In this group full active treatment was continued until the time of death. In the remaining 14 patients a clear decision of futility was documented. 11 of these patients were started on the BMLCP. In the other 3 patients a decision of futility was made per death when it became apparent that despite maximal treatment death was inevitable. This precluded starting them on the BM-LCP. 14/14 decisions of futility were made by the burns multidisciplinary team (consultant surgeon, consultant burns anaesthetist, senior nursing staff and therapists). Adherence to the BM-LCP was well documented with no recorded variance from the goals set out by the pathway suggesting that the modifications made to the pathway were indeed appropriate for our patient group. 7 patients were started on the BM-LCP on admission as their injuries were deemed to be unsurvivable. All of these rapidly succumbed to their injury. The mean time from instigation of the BM-LCP to death was
983
burns 37 (2011) 981–985
[()TD$FIG] Review decision and discuss with MDT
Decision of fulity made by MDT
No
Yes
Conduct Inial Assessment Connue Care
Secon 1, Goals 1 -11
Re evaluate goals every 48 Hours
Adjust Care Record Adjustment
4 Hourly Assessment Pain Free? Not Agitated? Not Breathless? Mouth care?
Not troubled by Secreons? No Nausea or Voming? Wound Care Adequate? Medicaon given as planned?
Yes
No
12 Hourly Assessment Pressure Care? Wound Care?
Psychological Support? Family Support?
Care Aer Death GP Contact? Religious needs addressed? Paperwork completed?
Coroner Contact? Family Discussion? Valuables and Belongings?
Fig. 1 – Decision summarising pathway.
11 h (range 3–48 h). In all cases the family/next of kin were made aware of the pathway and understood its goals.
5.
Discussion
It is inevitable that, despite advances in burn treatment, death will be the outcome for some burn victims. Prediction of poor outcome and recognizing the point of futility remains a challenge [13–19] but should remain a priority as quality end of life care is arguably as important as life sustaining care. The concept of a ‘‘good’’ death is important. The dying should be treated with respect and dignity, should be without
pain and distressing symptoms and should be in the company of close family and/or friends [1]. The LCP is widely acknowledged to improve end of life care by standardizing actions and increasing the confidence of care givers when dealing with a dying patient as it supports problem anticipation and promotes proactive management of comfort [8,9,12]. Its use as an audit tool to improve care delivery is also recognized. The LCP provides education and feedback to professionals involved in terminal care and identifies room for improvement by highlighting areas where goals have not been attained [20]. LCP delivered care also has an effect on relatives as levels of bereavement are statistically significantly lower in relatives of those treated by the LCP when compared to those not treated
984
burns 37 (2011) 981–985
Table 1 – Patient demographics.
1 2 3 4 5 6 7 8 9 10 11 a
Age
% TSBA
Mechanism
55 75 82 72 73 30 49 65 28 25 30
84 43 15 55 60 80 95 2a 95 95 95
Self immolation Scald Flame Flame Flame Self immolation Flame Scald Electrical Flame self immolation
Decision of futility?
By whom?
Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes
MDT MDT MDT MDT MDT MDT MDT MDT MDT MDT MDT
Time from start LCP-death (h) 5.5 1.25 18 12 6.5 10 0.25 48 5 16 3
Variance from BM-LCP NO NO NO NO NO NO NO NO NO NO NO
ABSI 14 11 10 13 13 12 15 7 14 14 14
Widespread metastatic disease, for palliative care only.
with the LCP. Patient comfort is increased and symptom burden reduced by attainment of goals, this has been supported by improvements in relatives perception of symptom improvement [21]. The legal aspects of providing end of life care are complex and multifaceted. It is essential that staff involved in care are fully educated regarding issues such as consent, best interest and mental capacity [2]. It is vital that the emphasis for end of life care focuses on improving the final days and hours for the patient, it should not be viewed as a means to shorten life nor hasten death. The LCP came under media criticism for this when it was introduced [22]. In response to this further audit work was carried out across the NHS which concluded that the LCP improved care and was not detrimental in any way to the patient [22]. The concept of comfort care in burns is not new. Watchel et al. in 1987 [16] published a guide for comfort care based upon attainment of 12 goals which encompasses many of the goals raised by the LCP. They emphasis that a decision to engage in comfort care does not mean no care but should be viewed as a change in goals. The goal, rather than prolonging life, is to enhance the quality of remaining life. We feel that the modifications made to the LCP to adapt its use in burns addresses these goals and works towards the same end point. The layout of the LCP provides an easy to follow framework to ensure that these goals are reached. The BM-LCP is being appropriately used within our department and appears to be achieving its goal. The decision of futility will always be difficult in some cases. This decision should not be the responsibility of a sole clinician but a multi disciplinary discussion following a full and frank debate regarding the patient’s clinical course and likely outcome between clinicians and including the family. This decision must be clearly documented and should be reviewed if the clinical condition changes [23]. In our opinion using the BMLCP in a timely manner improves the end of life experience for patients and, from the limited feedback we have been given, also for their relatives. Unfortunately we do not have any formal evaluation of the BM-LCP from relatives although this is something we plan to collect in the future as the BM-LCP is further evaluated. Staff on the unit feel more at ease with the concept of impending death and are more confident treating dying patients when treatment goals are clearly defined. Our nursing staff unanimously support the use of the pathway.
Ongoing support and education for staff once the pathway has been introduced has been identified as being pivotal to successful implementation of any type of LCP [24]. Prior to it being introduced educational sessions were run to ensure that all nursing and medical staff were aware of the pathway. Refresher sessions are available if we have an intake of new staff. The modifications made to the pathway are appropriate and further modifications unnecessary at present as all goals were attained with no variance. All of the modifications made to the original LCP were made after lengthy discussion within our unit regarding priorities in treating a patient dying from their burn injury. We believe the efficacy of these changes is proven by 100% adherence to the goals with no additional concerns regarding treatment being raised by members of the MDT following the introduction of the pathway. We are, however, always prepared to make changes should the need arise as believe that the care offered to the patients must be flexible to continue to provide the best experience for patients and their families. The BM-LCP is only used for adult patients; we do not have a pathway for children at this time. It is our intention to re-audit our experience of the BM-LCP on a regular basis and we hope that it will become a useful tool in other units throughout the UK and beyond. We would very much like to extend data collection across a wider number of units. With an increased population base it would be very interesting to collect data regarding the experience of care givers and relatives for patients treated according to the BMLCP. This data would hopefully, in the long-term, provide evidence to allow us to compare the experience of death in the acute setting with that in the hospice and cancer setting and assist us in attempting to minimize the trauma of death and the grief response for relatives.
6.
Conclusion
There is an encouraging trend towards recognizing the importance of end of life care, driven perhaps by End of Life strategy published in 2007 [1]. The LCP seems to be gaining recognition within the acute hospital setting as a useful treatment guide but taken in its unmodified form does not address all aspects of burn care in burn related deaths. The BM-LCP is the first example of a specific end of life pathway for use in burns patients. Our experience is that it is easy to
burns 37 (2011) 981–985
adhere to and is well received by the staff using it. Consequently, we recommend it to the burn community both to improve care and to standardize end of life care in burns patients throughout the UK and beyond.
Conflict of interest There is no conflict of interest to declare.
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