Tunnel vision

Few people will have missed the recent controversy centring on the Liverpool Care Pathway (LCP). The palliative care protocol developed by the Marie Curie Palliative Care Institute aimed to ensure that hospitals used a similar framework to that of the hospice movement. It was designed to meet the needs of people who are dying and provide appropriate support for their relatives and carers.

However, with press headlines such as '"I had no idea my wife was on the Liverpool Care Pathway"' (Daily Mail) and 'Doctors put my mother on 'death pathway' without telling me' (The Telegraph) it seems many families do not understanding the programme and fear they have 'signed their loved ones' lives away'.

From a medical perspective, it is good practice to review the care and treatment of a patient who is only expected to live for hours or days. It may be appropriate for some interventions to be continued, some suspended, and others started. Using the lengthy LCP document is supposed to ensure that all the person's needs are met, and that their family or carers are informed and given support.

But according to adverse media reports, whatever the underlying philosophy, there is widespread concern that the LCP is being used inappropriately. It's a way of hastening deaths that were not inevitable. The Daily Mail said hospitals were receiving "millions in bonus payments in return for hitting targets for numbers of patients put on the [LCP]" and it was a means to "free beds and get rid of difficult patients" ('Care expert who treated Mo Mowlam brands Liverpool Care Pathway "the most corrupt practice in British medicine"', 5 November 2012).

In the main, healthcare professionals are disputing these claims. The LCP is "a compassionate, carefully written document which helps doctors, patients and their families to make the right decisions near the end of life. It ensures that nothing is forgotten - like pressure areas, mouth care or the spiritual needs of the patient - and it encourages regular review" ('Jeremy Hunt is playing politics with end-of-life care', The Guardian, 6 November 2012). And the document itself repeatedly stresses the need for the input of family members and carers, or an advocate.

Crossed paths

Examples of the LCP documents can be downloaded easily to discuss with anxious clients. They show that the treating clinicians are asked to monitor and record the extent to which various goals are being met (for example, freedom from pain, distress, respiratory and continence problems). They also include provision for appropriate non-medical arrangements to be made to ensure the patient's personal and spiritual needs are met.

Clients may be reassured to see that the protocol documentation explicitly prompts the clinicians to share information with them and their carers. This is backed up with appropriate written confirmation. It also advises that reviews should be carried out at least every three days, and more frequently if the patient shows signs of improvement; in this case the LCP may be withdrawn, or if the family express concerns.

Of more comfort is research that indicates care documentation is significantly more comprehensive, and symptoms are lower when the LCP is followed.

Is the 'problem' with the LCP less about the document itself? Perhaps it's the gap between what doctors mean by measures that sustain life (as opposed to 'saving life'), and the public's unfamiliarity with what may be medically achievable for them or their loved ones. While one solution to this would be improved communication skills training for healthcare professionals, what is the legal position?

Difficult message

From a legal perspective, the dilemma for practitioners is how to advise clients who say that they want to refuse the LCP, given that its underlying intention is to provide basic palliative care, and that many individuals in the last stages of life may lack the capacity to make or communicate decisions about their care.

The Mental Capacity Act 2005 (MCA) provides that a valid advance decision about treatment is binding through subsequent incapacity so long as it is both valid and applicable when made.

But there are several problems with using advance decisions to refuse treatment (ADRT) for the LCP.

Not only might a clinician use another palliative care pathway to avoid the LCP's 'brand association', but the way the law draws distinctions between treatment requests and refusals, and between clinician's liability for acts and omissions, may appear arbitrary.

The first problem with refusing the LCP is that it is designed to provide basic care to keep the patient comfortable: warmth, shelter, actions to keep a person clean and the offer of food and water by mouth, which the MCA Code of Practice states patients cannot refuse.

The second difficulty is that although patients can make a valid refusal of treatment (that is any competent patient can refuse an active measure, such as artificial ventilation), since the case of R (on the application of Burke) v General Medical Council [2004] EWHC 1879 (Admin), patients cannot insist on receiving a particular form of treatment.

While it is possible for a client to make an 'advance statement' requesting a specified intervention, it cannot bind a doctor who is always able to refuse to provide treatment that they consider unnecessary, futile or inappropriate. Given that worries about being refused clinically assisted nutrition and hydration seem to be one of the most common concerns of patients and their families, the strict legal position on treatment refusal may be cold comfort for many clients.

Double effect

Another issue arises from the difficult ethical principle of 'double effect'. This means that a physician is legally (if not morally) able to use sedation or pain relief on the patient, which may also shorten their life.

If the clinician's main intention is to end life, they are liable to face prosecution, but if the death results simply as a side effect of treatment, which was intended to benefit the patient (even if death was reasonably foreseeable), then it will not be treated as a crime.

In what is likely to be an emotionally charged setting, it is unsurprising that many relatives find it difficult to be dispassionate about the legal and ethical distinctions.

However, it is important to recognise that, for many clients, the fear that they have or are trying to guard against is that medical staff will be too busy to consult with them or their relatives properly and that carers will be sidelined. If that is the case, those clients might benefit from making a lasting power of attorney (LPA) for health and welfare to give their loved ones the power to act for them.

Although a valid LPA may not affect the patient's clinical presentation, it may give the attorneys the confidence of knowing that they have a legally recognised role and the right to be heard.

Where clients wish to have both an ADRT and a health and welfare LPA, it is important that practitioners ensure that the documents are consistent: an LPA (health and welfare) may invalidate a later ADRT if option A (on page 6 of the prescribed form) is selected, or if the LPA contains provisions (particularly restrictions or conditions) that conflict with the earlier ADRT.

If drawing up the documents at the same time, consider whether to incorporate the terms of the ADRT within the LPA.

Perceived gap

Few people would argue with the LCP's aims of ensuring that patients experience a dignified and comfortable death. But widespread concern about the perceived gap between its aims and its reality in practice has not gone unheard.

The Department of Health has commissioned an independent review of the LCP, the results of which are due later this year. It will be interesting to see whether the recommendations have any implications for private client practitioners when advising on end-of-life planning.

In the meantime, while practitioners cannot defeat the inevitable, sensitive and appropriate advice may help clients to put themselves in the best possible position to face life's most difficult challenge.

Carol McBride is a solicitor at Pannone

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