Downloaded from http://jme.bmj.com/ on November 16, 2015 - Published by group.bmj.com
End of life
Demise of the LCP: villain or scapegoat? David MacKintosh ABSTRACT The winding down and withdrawal of the Liverpool Care Pathway (LCP) following the Neuberger Report has been met with mixed reviews. It appears that responsibility for failures of clinical care has been laid at the feet of a care pathway rather than the practitioners who used it, a rather curious outcome given that the LCP was primarily a system of documentation, a tool with no intrinsic therapeutic properties. The Neuberger inquiry was the result of persistent and repeated reports of poor-quality end-of-life care associated with the use of the LCP. There were indeed problems with the LCP regarding the process of diagnosing dying and its approach to supportive care, particularly artificial nutrition and hydration. Some of the problems were the product of personal or professional ideology influencing goals of care rather than patient-centred considerations. These problems were not insurmountable, however, and were being addressed by the organisation responsible for the LCP. With the removal of the LCP, we are left with no bench mark for end-of-life care, only aspirational goals for individualised care plans. It seems unlikely that practitioners who could not provide appropriate care with the LCP will do so without it. Care pathways or clinical pathways such as the Liverpool Care Pathway (LCP) are widely used in healthcare, having emerged from industrial processes such as construction and aviation in the 1980s. They are used for, among other purposes, monitoring processes, clinical governance and improving quality of care.1 The LCP has found itself in the unusual, possibly curious, situation of being held responsible for lapses in clinical care. Wrigley2 has written a thoughtful and informed critique of the LCP, much of which would resonate with healthcare practitioners who have worked with the LCP in supporting end-of-life care. In their reply, Rady and Verheijde3 have likened the LCP to ‘a… drug or medical device’ missing Wrigley’s carefully made Correspondence to Dr David MacKintosh, Palliative Medicine, Central Coast Palliative Care Service, Killarney Vale, New South Wales 2261, Australia; [email protected] 650
point that the LCP is not a treatment; it was never intended to be and such a comparison is not valid. This is an error that Neuberger also made.4 The efficacy of the tool was dependent on the skill of those who used it, not the tool itself. The LCP is a system of documentation designed to facilitate the transfer of best practice end-of-life care from a specialist palliative care setting to a generalist setting. If in some way it has failed, the fault is not that of the process represented by the LCP. Practitioners unable to provide considered and ethical end-of-life care with the LCP for guidance are unlikely to do so without it. That is not to say there were no problems with the LCP. At the time of its demise the LCP was in its 12th version, introduced at the end of 2009.5 Up until that time, diagnosing dying could indeed be interpreted as being substantially a tick box approach where satisfying two out of four conditions was sufficient. Early versions were silent on the question of artificial nutrition and hydration and the provision of treatment with possible lifeextending as well as life-enhancing effects, antibiotics or intravenous fluids, asking only that non-essential treatments and interventions be discontinued. The original newspaper article criticising the LCP6 and the precipitating letter7 appeared in The Telegraph newspaper on 2 September 2009 and 3 September 2009; the letter, it should be noted, was written not by a bunch of scaremongers but a group of concerned health professionals which included an emeritus professor of geriatrics and a consultant in palliative medicine. Excluding duplicates, The Telegraph posted 431 individual comments in response to the article and letter. A review of the correspondence conducted by the author categorised the comments as ‘considered’ (it appeared as though some thought had gone into the response) and ‘ill-considered’ (little or no thought); at that time the ‘death panel’ debate was underway in the USA. Of comments that could be classified as ‘considered’, about 65% of total posts, 15% appeared to be comfortable with the system as they perceived it at the time and 35% expressed concern; the remaining 50% were unclear but apparently wanted
to comment. The response of the healthcare community to what was hardly a ringing endorsement of the system of end-of-life care was largely to dismiss the criticism as unwarranted. In retrospect, this was probably unwise as an opportunity was missed to address what were real community concerns about end-of-life care, warranted or otherwise, even though healthcare professionals may not have agreed. As Rady and Verheijde3 pointed out, the endorsements of professional societies which followed did not constitute a validation of the LCP and were of little constructive use in the absence of an adequate appraisal of community concern. In 2009, the most recent iteration of the LCP in use was V.11.7 The criteria for commencing the documentation of the LCP stated that the ‘Multi Professional Team has agreed the patient is dying, has two of the following symptoms and all other reversible causes have been ruled out’. The four symptoms were ‘The patient is bedbound, Only able to take sips of fluid, Semi-Comatose. No longer able to take tablets’ none of which are specific to a dying person. Goal 3 of the document ‘Discontinue Inappropriate Interventions’ asks, among other questions, if antibiotics and ‘artificial hydration/nutrition’ have been stopped. If the patient was having these interventions and the treating clinician declined to discontinue, then a ‘variance’ had to be entered where the reasons behind the decision were documented and explained; the implication being that they should be stopped. In September 2009, V.12 was being drafted. (The draft is no longer available.) Its instructions were more comprehensively documented and reiterated the clinician’s freedom to exercise their clinical judgement. It indicated that antibiotics and artificial nutrition and hydration were not specifically excluded but asked that the clinical appropriateness of their use be justified and reasons documented, a sort of professional ‘please explain’. The final text of V.12 was published in December 2009,5 3 months after the article in The Telegraph. The differences between the draft and the final version were significant suggesting that preceding events had not gone unnoticed. Diagnosing dying retained the initial tick box approach but was accompanied by a comprehensive decision-making algorithm. The LCP position on hydration and antibiotics indicated that the LCP did not preclude their use; the ‘please explain’ had been removed. The relevant paragraph ran:
MacKintosh D. J Med Ethics August 2015 Vol 41 No 8
Downloaded from http://jme.bmj.com/ on November 16, 2015 - Published by group.bmj.com
End of life A blanket policy of clinically assisted (artificial) nutrition or hydration, or of no clinically assisted (artificial) hydration is ethically indefensible….
Clarification of the approach to artificial nutrition and hydration was a substantial improvement in personalising end-of-life care planning and demonstrated a capacity to review the process in response to changing circumstances. Although it could be argued that the LCP never had an explicit blanket policy, the tone of earlier versions, including the draft of V.12, clearly indicated that the expectation was that artificial hydration and nutrition should be stopped. It might well be asked why in V.12 a blanket policy became ‘ethically indefensible’ when there appears to have been one in place for the previous 11 versions. How did things go so wrong for the LCP? Reluctance to address community concern at the outset was an error of judgement, the responses to the letter and article in The Telegraph made up an important social document and should have been given the respect it deserved, however galling it may have been. In part, it was not so much what was said in the LCP documentation as what was not said and brings to light the difficulties of end-of-life decision making. Ticking two out of four boxes about symptoms that were not specific to the dying patient now seems a rather naïve approach; diagnosing dying can be a complex decisionmaking process filled with uncertainties. The need for a team decision and excluding reversible causes was always present though seemed to become invisible—they were there but people stopped seeing them. Specialist palliative care teams make their decisions very carefully following all the safeguards contained within the LCP. Much of what is implicit in the practice of specialist palliative care was never made explicit; the V.12 algorithm came too late. The need to stop
MacKintosh D. J Med Ethics August 2015 Vol 41 No 8
invasive and futile or burdensome treatment came to be a mantra, part of the ideology of palliative care rather than a component of considered decision making and personalisation of care. Difficulties in separating personal and professional ideology from patientcentred goals of care, a problem facing everybody involved in end-of-life care, have been discussed elsewhere.8 To some degree, in order to use the LCP safely and in the manner in which it was intended, practitioners already had to be knowledgeable in end-of-life care or implementation had to be carefully monitored on an ongoing basis. The LCP has been accused of adopting a ‘one size fits all’ approach. However, that is not the case as a careful examination of the documentation will reveal. Instead, the LCP was interpreted as being a ‘one size fits all’ tool to practitioners without the required skills to read between the lines; ‘one size fits all’ is easier and the patient will be dead anyway.9 One irony of the passing of the LCP is that, without it, a standard against which to evaluate end-of-life care would not have existed and now it has gone, there is no such measure. Villain or scapegoat? Probably, a bit of both, but, at the end of the day, the LCP was just a sheaf of paper lying in a drawer, the only power it had was that given to it by the people who used it in whatever manner they chose. Problems in providing ethical end-of-life care will not be solved by any document. Calls for more or better evidence3 are misplaced since what is being measured is not the performance of the tool but the performance of the user. As Wrigley has argued,2 Neuberger got it wrong. In place of an imperfect tool, we are left only with aspirational goals of providing personalised end-of-life care and no guide for the inexperienced to follow. Perhaps, we need a pathway.
Provenance and peer review Not commissioned; externally peer reviewed.
To cite MacKintosh D. J Med Ethics 2015;41:650– 651. Received 26 August 2014 Revised 22 September 2014 Accepted 29 December 2014 Published Online First 20 January 2015
▸ http://dx.doi.org/10.1136/medethics-2013-101780 ▸ http://dx.doi.org/10.1136/medethics-2014-102314 ▸ http://dx.doi.org/10.1136/medethics-2013-101533 J Med Ethics 2015;41:650–651. doi:10.1136/medethics-2014-102424
REFERENCES 1
2
3
4
5
6
7
8
9
Vanhaecht K, Panella M, Van Zelm R, et al. An overview on the history and concept of care pathways as complex interventions. Int J Care Pathw 2010;14(3):117–23. Wrigley A. Ethics and end of life care: the Liverpool Care Pathway and the Neuberger Review. J Med Ethics 2015;41:639–43. Rady MY, Verheijde JL. Liverpool care pathway: life-ending pathway or palliative care pathway? J Med Ethics 2015;41:644. Neuberger J, Guthrie C, Aaronvitch D. More care, less pathway: a review of the Liverpool care pathway. Department of Health, Crown Copyright. 2013. Liverpool Care Pathway (Generic) Version 12. http:// www.oncuview.tv/portals/0/linkedfiles/LCP%20generic %20version%2012.pdf (accessed 05/08/2014). Devlin K. Sentenced to death on the NHS. The Telegraph, 2 Sep 2009. http://www.telegraph.co.uk/ health/healthnews/6127514/Sentenced-to-death-onthe-NHS.html (accessed 05/08/2014). Millard PH, Cole A, Hargreaves P, et al. Dying Patients. The Telegraph, 3 Sep 2009. http://www. telegraph.co.uk/comment/letters/6133157/Dyingpatients.html (accessed 05/08/2014). Zimmermann C, Rodin G. The denial of death thesis: sociological critique and implications for palliative care. Palliat Med 2004;18(2):121–8. MacKintosh D. Death as “Harm” when it is an anticipated outcome in palliative care—or anywhere. J Palliat Med 2014;17(5):502.
Competing interests None.
651
Downloaded from http://jme.bmj.com/ on November 16, 2015 - Published by group.bmj.com
Demise of the LCP: villain or scapegoat? David MacKintosh J Med Ethics 2015 41: 650-651 originally published online January 20, 2015
doi: 10.1136/medethics-2014-102424 Updated information and services can be found at: http://jme.bmj.com/content/41/8/650
These include:
References Email alerting service
Topic Collections
This article cites 5 articles, 3 of which you can access for free at: http://jme.bmj.com/content/41/8/650#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Articles on similar topics can be found in the following collections End of life decisions (ethics) (329) End of life decisions (geriatric medicine) (329) End of life decisions (palliative care) (329) Hospice (115)
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
End of life
Demise of the LCP: villain or scapegoat? David MacKintosh ABSTRACT The winding down and withdrawal of the Liverpool Care Pathway (LCP) following the Neuberger Report has been met with mixed reviews. It appears that responsibility for failures of clinical care has been laid at the feet of a care pathway rather than the practitioners who used it, a rather curious outcome given that the LCP was primarily a system of documentation, a tool with no intrinsic therapeutic properties. The Neuberger inquiry was the result of persistent and repeated reports of poor-quality end-of-life care associated with the use of the LCP. There were indeed problems with the LCP regarding the process of diagnosing dying and its approach to supportive care, particularly artificial nutrition and hydration. Some of the problems were the product of personal or professional ideology influencing goals of care rather than patient-centred considerations. These problems were not insurmountable, however, and were being addressed by the organisation responsible for the LCP. With the removal of the LCP, we are left with no bench mark for end-of-life care, only aspirational goals for individualised care plans. It seems unlikely that practitioners who could not provide appropriate care with the LCP will do so without it. Care pathways or clinical pathways such as the Liverpool Care Pathway (LCP) are widely used in healthcare, having emerged from industrial processes such as construction and aviation in the 1980s. They are used for, among other purposes, monitoring processes, clinical governance and improving quality of care.1 The LCP has found itself in the unusual, possibly curious, situation of being held responsible for lapses in clinical care. Wrigley2 has written a thoughtful and informed critique of the LCP, much of which would resonate with healthcare practitioners who have worked with the LCP in supporting end-of-life care. In their reply, Rady and Verheijde3 have likened the LCP to ‘a… drug or medical device’ missing Wrigley’s carefully made Correspondence to Dr David MacKintosh, Palliative Medicine, Central Coast Palliative Care Service, Killarney Vale, New South Wales 2261, Australia; [email protected] 650
point that the LCP is not a treatment; it was never intended to be and such a comparison is not valid. This is an error that Neuberger also made.4 The efficacy of the tool was dependent on the skill of those who used it, not the tool itself. The LCP is a system of documentation designed to facilitate the transfer of best practice end-of-life care from a specialist palliative care setting to a generalist setting. If in some way it has failed, the fault is not that of the process represented by the LCP. Practitioners unable to provide considered and ethical end-of-life care with the LCP for guidance are unlikely to do so without it. That is not to say there were no problems with the LCP. At the time of its demise the LCP was in its 12th version, introduced at the end of 2009.5 Up until that time, diagnosing dying could indeed be interpreted as being substantially a tick box approach where satisfying two out of four conditions was sufficient. Early versions were silent on the question of artificial nutrition and hydration and the provision of treatment with possible lifeextending as well as life-enhancing effects, antibiotics or intravenous fluids, asking only that non-essential treatments and interventions be discontinued. The original newspaper article criticising the LCP6 and the precipitating letter7 appeared in The Telegraph newspaper on 2 September 2009 and 3 September 2009; the letter, it should be noted, was written not by a bunch of scaremongers but a group of concerned health professionals which included an emeritus professor of geriatrics and a consultant in palliative medicine. Excluding duplicates, The Telegraph posted 431 individual comments in response to the article and letter. A review of the correspondence conducted by the author categorised the comments as ‘considered’ (it appeared as though some thought had gone into the response) and ‘ill-considered’ (little or no thought); at that time the ‘death panel’ debate was underway in the USA. Of comments that could be classified as ‘considered’, about 65% of total posts, 15% appeared to be comfortable with the system as they perceived it at the time and 35% expressed concern; the remaining 50% were unclear but apparently wanted
to comment. The response of the healthcare community to what was hardly a ringing endorsement of the system of end-of-life care was largely to dismiss the criticism as unwarranted. In retrospect, this was probably unwise as an opportunity was missed to address what were real community concerns about end-of-life care, warranted or otherwise, even though healthcare professionals may not have agreed. As Rady and Verheijde3 pointed out, the endorsements of professional societies which followed did not constitute a validation of the LCP and were of little constructive use in the absence of an adequate appraisal of community concern. In 2009, the most recent iteration of the LCP in use was V.11.7 The criteria for commencing the documentation of the LCP stated that the ‘Multi Professional Team has agreed the patient is dying, has two of the following symptoms and all other reversible causes have been ruled out’. The four symptoms were ‘The patient is bedbound, Only able to take sips of fluid, Semi-Comatose. No longer able to take tablets’ none of which are specific to a dying person. Goal 3 of the document ‘Discontinue Inappropriate Interventions’ asks, among other questions, if antibiotics and ‘artificial hydration/nutrition’ have been stopped. If the patient was having these interventions and the treating clinician declined to discontinue, then a ‘variance’ had to be entered where the reasons behind the decision were documented and explained; the implication being that they should be stopped. In September 2009, V.12 was being drafted. (The draft is no longer available.) Its instructions were more comprehensively documented and reiterated the clinician’s freedom to exercise their clinical judgement. It indicated that antibiotics and artificial nutrition and hydration were not specifically excluded but asked that the clinical appropriateness of their use be justified and reasons documented, a sort of professional ‘please explain’. The final text of V.12 was published in December 2009,5 3 months after the article in The Telegraph. The differences between the draft and the final version were significant suggesting that preceding events had not gone unnoticed. Diagnosing dying retained the initial tick box approach but was accompanied by a comprehensive decision-making algorithm. The LCP position on hydration and antibiotics indicated that the LCP did not preclude their use; the ‘please explain’ had been removed. The relevant paragraph ran:
MacKintosh D. J Med Ethics August 2015 Vol 41 No 8
Downloaded from http://jme.bmj.com/ on November 16, 2015 - Published by group.bmj.com
End of life A blanket policy of clinically assisted (artificial) nutrition or hydration, or of no clinically assisted (artificial) hydration is ethically indefensible….
Clarification of the approach to artificial nutrition and hydration was a substantial improvement in personalising end-of-life care planning and demonstrated a capacity to review the process in response to changing circumstances. Although it could be argued that the LCP never had an explicit blanket policy, the tone of earlier versions, including the draft of V.12, clearly indicated that the expectation was that artificial hydration and nutrition should be stopped. It might well be asked why in V.12 a blanket policy became ‘ethically indefensible’ when there appears to have been one in place for the previous 11 versions. How did things go so wrong for the LCP? Reluctance to address community concern at the outset was an error of judgement, the responses to the letter and article in The Telegraph made up an important social document and should have been given the respect it deserved, however galling it may have been. In part, it was not so much what was said in the LCP documentation as what was not said and brings to light the difficulties of end-of-life decision making. Ticking two out of four boxes about symptoms that were not specific to the dying patient now seems a rather naïve approach; diagnosing dying can be a complex decisionmaking process filled with uncertainties. The need for a team decision and excluding reversible causes was always present though seemed to become invisible—they were there but people stopped seeing them. Specialist palliative care teams make their decisions very carefully following all the safeguards contained within the LCP. Much of what is implicit in the practice of specialist palliative care was never made explicit; the V.12 algorithm came too late. The need to stop
MacKintosh D. J Med Ethics August 2015 Vol 41 No 8
invasive and futile or burdensome treatment came to be a mantra, part of the ideology of palliative care rather than a component of considered decision making and personalisation of care. Difficulties in separating personal and professional ideology from patientcentred goals of care, a problem facing everybody involved in end-of-life care, have been discussed elsewhere.8 To some degree, in order to use the LCP safely and in the manner in which it was intended, practitioners already had to be knowledgeable in end-of-life care or implementation had to be carefully monitored on an ongoing basis. The LCP has been accused of adopting a ‘one size fits all’ approach. However, that is not the case as a careful examination of the documentation will reveal. Instead, the LCP was interpreted as being a ‘one size fits all’ tool to practitioners without the required skills to read between the lines; ‘one size fits all’ is easier and the patient will be dead anyway.9 One irony of the passing of the LCP is that, without it, a standard against which to evaluate end-of-life care would not have existed and now it has gone, there is no such measure. Villain or scapegoat? Probably, a bit of both, but, at the end of the day, the LCP was just a sheaf of paper lying in a drawer, the only power it had was that given to it by the people who used it in whatever manner they chose. Problems in providing ethical end-of-life care will not be solved by any document. Calls for more or better evidence3 are misplaced since what is being measured is not the performance of the tool but the performance of the user. As Wrigley has argued,2 Neuberger got it wrong. In place of an imperfect tool, we are left only with aspirational goals of providing personalised end-of-life care and no guide for the inexperienced to follow. Perhaps, we need a pathway.
Provenance and peer review Not commissioned; externally peer reviewed.
To cite MacKintosh D. J Med Ethics 2015;41:650– 651. Received 26 August 2014 Revised 22 September 2014 Accepted 29 December 2014 Published Online First 20 January 2015
▸ http://dx.doi.org/10.1136/medethics-2013-101780 ▸ http://dx.doi.org/10.1136/medethics-2014-102314 ▸ http://dx.doi.org/10.1136/medethics-2013-101533 J Med Ethics 2015;41:650–651. doi:10.1136/medethics-2014-102424
REFERENCES 1
2
3
4
5
6
7
8
9
Vanhaecht K, Panella M, Van Zelm R, et al. An overview on the history and concept of care pathways as complex interventions. Int J Care Pathw 2010;14(3):117–23. Wrigley A. Ethics and end of life care: the Liverpool Care Pathway and the Neuberger Review. J Med Ethics 2015;41:639–43. Rady MY, Verheijde JL. Liverpool care pathway: life-ending pathway or palliative care pathway? J Med Ethics 2015;41:644. Neuberger J, Guthrie C, Aaronvitch D. More care, less pathway: a review of the Liverpool care pathway. Department of Health, Crown Copyright. 2013. Liverpool Care Pathway (Generic) Version 12. http:// www.oncuview.tv/portals/0/linkedfiles/LCP%20generic %20version%2012.pdf (accessed 05/08/2014). Devlin K. Sentenced to death on the NHS. The Telegraph, 2 Sep 2009. http://www.telegraph.co.uk/ health/healthnews/6127514/Sentenced-to-death-onthe-NHS.html (accessed 05/08/2014). Millard PH, Cole A, Hargreaves P, et al. Dying Patients. The Telegraph, 3 Sep 2009. http://www. telegraph.co.uk/comment/letters/6133157/Dyingpatients.html (accessed 05/08/2014). Zimmermann C, Rodin G. The denial of death thesis: sociological critique and implications for palliative care. Palliat Med 2004;18(2):121–8. MacKintosh D. Death as “Harm” when it is an anticipated outcome in palliative care—or anywhere. J Palliat Med 2014;17(5):502.
Competing interests None.
651
Downloaded from http://jme.bmj.com/ on November 16, 2015 - Published by group.bmj.com
Demise of the LCP: villain or scapegoat? David MacKintosh J Med Ethics 2015 41: 650-651 originally published online January 20, 2015
doi: 10.1136/medethics-2014-102424 Updated information and services can be found at: http://jme.bmj.com/content/41/8/650
These include:
References Email alerting service
Topic Collections
This article cites 5 articles, 3 of which you can access for free at: http://jme.bmj.com/content/41/8/650#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Articles on similar topics can be found in the following collections End of life decisions (ethics) (329) End of life decisions (geriatric medicine) (329) End of life decisions (palliative care) (329) Hospice (115)
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
![[Renaissance or demise of the hospital-affiliated physician].](/assets/img/hold.png)
