Stop, Think and Change
The Liverpool Care Pathway ("the LCP") was introduced in the late 1990s to help improve the care of patients in their dying hours and to ensure that patients are not "overmedicalised." As nearly 60% of people in England die in hospitals, the LCP helps move end of life care from the hospice setting to all other clinical settings in an attempt to standardise and equalise care for the dying. It was created by the Hospital Special Palliative Care Team from the Royal Liverpool and Broadgreen University Hospitals NHS Trust along with staff from the Marie Curie Hospice in Liverpool.
The LCP is in the format of a checklist covering the following topics:
- symptom control;
- comfort measures;
- anticipatory prescribing of medication;
- discontinuation of inappropriate measures;
- psychological and spiritual care; and
- care of the family (both before and after death).
Healthcare professionals have to complete "tick-boxes" to demonstrate compliance with a number of "goals" within each topic. Where a goal has not been met, the healthcare professional has to provide a written reason for the "variation" from the LCP. The whole checklist should be reviewed at least once every four hours, and during each review the healthcare professional should consider whether the patient should be taken off of the LCP for example in the 3% of cases where they have shown signs of improvement (1). (Notes and references appear at the end of this article.)
The LCP has come under a large amount of criticism in the press recently. This follows the publication of the latest audit of the LCP by its creators (2), in which it was identified that "there is still room for improvement."
Critics suggest that healthcare staff are not trained in care of the dying (3), that families are "kept in the dark" (4) and that neither families nor patients are offered religious or spiritual support in their final days (5). In addition, it is alleged that patients are left to starve and dehydrate with treatment being callously withdrawn.
However, the audit does highlight a number of positive outcomes. These include that 9 out of 10 patients were made comfortable in the 24 hours before their death, 88% of patients were prescribed drugs in anticipation of symptoms/pain that might develop as they neared death and 83% of patients had medication or fluids withdrawn because they were judged to be doing more harm than help (6).
The LCP has recently undergone a major review, which culminated in the launch of version 12 in December 2009. The new version will help alleviate many of the concerns raised by critics, as it includes novel practical guidance to help the healthcare professional make the decisions necessary to complete the checklist. When combined with the "10 step continuous quality improvement programme" that is being rolled out by the LCP Central Team, the new document will go a long way to counter the argument that arbitrary decisions are being made by untrained medical professionals. But will it go far enough?
The LCP is not a legally binding document. It is however, policy that has been adopted in 220 hospitals, 320 care homes and 100 hospices in England. It is also recommended as best practice by both the Department of Health in its 2008 "End of Life Care Strategy" and the National Institute for Health and Clinical Excellence’s 2004 guidelines on support and palliative care for patients with cancer.
The decisions and actions taken under the umbrella of the LCP do involve complex legal issues. Topical themes such as consent, best interests and capacity are all heavily engaged, and it is important that healthcare professionals are educated and well advised on these concepts to ensure that the LCP is not taken in isolation. This will become even more imperative as version 12 is implemented in early 2010.
So far, criticism levied at the LCP has focused on practical and emotional issues, and little discussion has been engaged with regard to the legal issues involved in the LCP. Set out below is an analysis of how the key legal concepts interact with the new version of the LCP.
Consent is the pivotal concept underpinning medical law in England and Wales. An adult of sound mind has an absolute right to consent to or refuse any treatment even if that consent or refusal will result in their death.
There are four key elements of consent. Firstly, only the consent/refusal of a capable adult is binding. A discussion of capacity follows later in this article. Secondly, it must be informed, and to this end it is the responsibility of the healthcare professionals to ensure that the patient has all the information they may reasonably need to make a decision. Thirdly, consent must be given free from duress. In a practical context it is often difficult to separate what is simply family concern and what is true duress. In recognition of this, it is advisable to speak with the patient alone in order to gauge their true wishes. Finally, consent must be specific and is an ongoing process.
What does this mean for the healthcare professional? If the patient is conscious, and has capacity, they should be involved in the decision to place them on the LCP, and indeed in any decisions to keep them on the LCP at review stage. This is not to say that the patient's choice is definitive, as a healthcare professional cannot be forced to treat (or not to treat as the case may be) in a manner that is against their beliefs or wishes. But, if a capable patient refuses treatment, any healthcare professional acting in contravention of the refusal is opening themselves up to liability.
Although the new version of the LCP makes inroads into the issue of consent, there is no opportunity to note whether or not the patient consents to being placed on the LCP. Although the LCP considers whether the patient is able to take an active part in communication and whether they are aware that they are dying, at no point does it actually specify that they should be taken through the implications of the LCP and their views upon it. Healthcare professionals and patients alike would be better safeguarded if there were space on the checklist to document, and thereby evidence, the patient's wishes in relation to their care plan.
The LCP does make adequate provision for identifying barriers to communication, and thereby highlights to the healthcare professional that all reasonable steps should be taken to aide a patient in communicating their decisions. However, it does not say that once all barriers to communication have been circumnavigated, the patient must be given all reasonable information necessary to enable them to make an informed decision.
In addition, there is no space to indicate as to whether the healthcare professional has conversed with the patient separately from their family and potential familial influences. This is an important safeguard for healthcare professionals in order to help them demonstrate that they have followed due process, and that any consent given is valid and free from accusations of duress.
As consent must be ongoing, it is important to assess the patient's ability to consent at every review of the LCP. There is no reflection of this in the new version of the LCP– it should be a check in the review stage of the LCP.
It is equally important to note that the issue of consent is very different with child patients. It may be helpful to flag on the LCP that separate advice should be taken when the patient is a child, as the position on valid and effective consent is infinitely more complex.
No one can give proxy consent on behalf of a competent adult. Therefore, although the "checks" detailed on the LCP regarding carer/relatives' ability to communicate effectively are useful to gauge the feelings of those close to the patient, the checklist is lacking in advising the healthcare professional on what weight to give to these wishes. So called "proxy consent" is only available under a lasting power of attorney where the patient lacks capacity. Any healthcare professional relying solely on the consent of a carer/relative without a lasting power of attorney is susceptible to heavy criticism and potential criminal liability.
The starting presumption with capacity is always that an adult patient has capacity to make a decision unless it is shown otherwise. Broadly speaking, the Mental Capacity Act 2005 sets out a two-stage test to determine whether an adult has capacity as follows:
- Does the patient have an impairment or disturbance in the functioning of their mind or brain? (Examples include dementia, significant learning disabilities, delirium, mental illness and symptoms of alcohol or drug use); and
- Does that impairment or disturbance mean that on the balance of probabilities they are unable to make the specific decision regarding their continued care?
Considering the importance of determining whether or not the patient has capacity to be involved in decisions regarding his or her continuing care, it is worth noting that the LCP only attributes one check box to this concept. The new version of the LCP does not go as far as the draft version in setting out the four considerations the healthcare professional should take into account when answering the second stage of the test. There is no guidance for the healthcare professional as to how a test for capacity should be undertaken.
This raises the possibility that the healthcare professional eager to complete the administrative requirements of the LCP may simply "tick" the box stating the patient does not have capacity without undertaking all reasonable steps to facilitate the patient in making a competent decision regarding his or her treatment. There is a risk that if the healthcare professional is not forced to stop, think and assess how a patient may be aided to meet the capacity criteria, allegations of arbitrary decision making could be made.
Advance Decisions and Lasting Powers of Attorney
Advance decisions and lasting powers of attorney are prominent concepts within the realm of care for incapacitated patients.
A valid and applicable advance decision noting the refusal of treatment is prohibitive, and a healthcare professional acting contrary to it is open to liability. It might be helpful to require that a healthcare professional to take into account the considerations necessary to answer the three pivotal questions involved in advance decisions. Does an advance decision exist? Is it valid? Is it applicable in the current circumstances? The omission of these questions, and no requirement to documenting their content, could lead to a vital step in the decision-making process being missed.
Lasting powers of attorney, or "living wills" as they are colloquially known are a novel addition to English law brought into being by the Mental Capacity Act 2005. The patient confers power on a donee to make decisions regarding their healthcare, should the patient become incapacitated. As with advance decisions, there are certain pre-requisites required in order for a lasting power of attorney to be valid. The new version of the LCP, as with advance decisions, does not refer to the pre-requisites required.
Unlike advance decisions, however, the decision of a donee under a lasting power of attorney is not automatically binding. The donee is under a duty to act in the best interests of the incapacitated patient. The healthcare professional can continue with a treatment plan, even in the face of a refusal from a donee, if the healthcare professional believes that he or she is acting in the best interests of the patient and the donee is not. This is an imperative power wielded by the healthcare professional, yet the LCP does not overtly require the healthcare professional to even consider whether decisions made by a donee are in the patient's best interests.
A healthcare professional is under a duty to act in the patient's best interests. Following the introduction of the Mental Capacity Act 2005 this is no longer a notional concept, but a process of due diligence that the healthcare professional should undertake and be able to justify.
Whilst the draft of the new version of the LCP did indeed take account of certain considerations involved in the determination of best interests, the new version of the LCP does not make reference to "best interests" in the initial assessment. It would be helpful to include a "check" to ensure that the patient is receiving treatment in their best interests. To reflect the gravity of best interests, a systematic checklist of all of the considerations as laid out in legislation, along with an opportunity for those considerations to be expanded upon should be provided as a minimum. As the LCP aims to prevent "overmedicalisation," its drafters should consider a tick box as to whether there are any alternative methods of meeting the patient's needs and whether the proposed care plan is the least restrictive of the patient's fundamental rights and freedoms.
Further, the LCP advocates an atmosphere of complete clinical agreement and collaboration amongst all of the healthcare professionals caring for the patient. In an ideal world this may be the case, but unfortunately in reality disagreement is commonplace. From a legal perspective, complete agreement although laudable is not necessary. When all is said and done, the responsibility to determine what action is in the patient's best interests falls to the leading treating clinician. In omitting a tick box to reflect the scenario where there is disagreement, the LCP fails to take account of realistic medical practice.
Confidentiality is to medicine what Tom is to Jerry. One cannot exist without the other. It is a principle that is so vitally important, it pertains even after death. It is not the case that just because a patient is coming to the end of their life, their right to confidentiality diminishes. At present, confidentiality does not appear to be mentioned in the checklist. Some may argue that confidentiality is such a strong foundation to medical practice, its prevalence goes without saying. However, if the LCP is to provide a whole-approach to end of life care as desired, it would be wise to reference confidentiality in the checklist. This is an important omission.
Indeed, just because confidentiality is an obvious consideration, does not make it a simple consideration. There is a difficult balance for the healthcare professional to strike between respect for the patient's confidentiality on the one hand, and keeping distressed and often very vocal relatives fully appraised of the situation on the other.
It would be helpful to include a check as to whether the patient has expressed any active desires that information should not be shared with certain people.
The "initial checklist" helpfully includes attention to the legal concepts underpinning the LCP; the "ongoing assessment" might benefit from the same attention. The healthcare professionals should have continuing regard to the legal principles involved in the LCP, and this can be facilitated through repeating the relevant checklists in the "ongoing assessment."
The LCP is undoubtedly a helpful framework for healthcare professionals involved in end of life care. However, as one consultant has said "tools are only as good as the workman," (8) and the workman is only as good as his understanding and training. Without further explanation and expansion upon the key legal principles surrounding the LCP, there might be a risk of patients suffering and healthcare professionals opening themselves up to liability. If healthcare professionals use the LCP in isolation, this could, at least from a legal perspective, lead to more harm than good. The age old adage is correct – the devil is in the detail, and the detail in the new version of the LCP could be improved.
Clinicians should be advised not to lose sight of core care principles when using the LCP checklist.
Notes and References
(1) The Times, 14th September 2009, Pg 20
(2) National Care of the Dying Audit of Hospitals Report, 14th September 2009, Marie Curie Palliative Care Institute
(3) The Times, 14th September 2009, Pg 20 - ¼ of doctors in hospitals are not trained in care for the dying.
(4) The Times, 14th September 2009, Pg 20 - 1 in 4 families are not informed that a patient is dying.
(5) The Times, 14th September 2009, Pg 20 - Less than half of terminally ill patients and their relatives are offered religious/spiritual support in final days.
(6) The Times, 14th September 2009, Pg 20
(8) Dr Rob George, Consultant in Palliative Care, Letter to the Times 18.09.09
This article was previously published in the February 2010 edition of Health Care Risk Report.