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Appendix A4

The Newcastle Upon Tyne Hospitals NHS Trust Clinical Ethics Advisory Group (CEAG) living wills policy

Stephen Louw Newcastle Upon Tyne Hospitals NHS Trust Clinical Ethics Advisory Group

Introduction
The CEAG discussed ‘Living Wills’ over a series of 5 meetings and the key conclusions and recommendations are presented below.

Helpful input was received from the Chairs of Ethics Committees of other Trusts, namely Dr M K Benson – Oxford Radcliffe Hospitals NHS Trust, Dr A K Watson – Nottingham and Dr J Dawson – Wirrell Hospital.

The group was assisted by Dr Anna Bachelor (Head, ITU services, RVI and NGH).

Documents that were tabled included:

  • ‘Advance Medical Directive’, published by Staywell;
  • The Voluntary Euthanasia Society’s Living Will;
  • The BMA’s ‘Physician Assisted Suicide Debating Pack’, Section 8 dealing with ‘Advance Statements about Medical Treatment’.

Key issues and Recommendations

1. Name of the document
It was agreed that the document should be called a ‘Living Will’, on the grounds that this has greater currency for the public, adequately expresses the purpose of the document and does not raise the expectation (as does ‘Directive’) that any related future decision by a doctor could be directed. However, in order to indicate the proper legal standing of a ‘Living Will’, the full title of any Trust document should include the phrase:

‘Living Will (Advance Refusal of Treatment)’

2. Legal status

The legal standing of Living Wills derives from case law, such as Re T (1993), which allowed that advance refusals of treatment are legally binding if: (a) they are clearly established; (b) they are applicable to the current circumstances; and (c) they have been made without undue pressure.

3. Medical Ethics Principles

3.1

The key principle of medical ethics that supports the use of Living Wills is that of autonomy, implying self-rule. It should be recognised, however, that this principle, despite its standing in discussion in most Anglo-American literature, is not universally accepted as being predominant. We recognise that most people should not be thought of atomistically as disengaged from the social environments in which they are embedded. For patients this means that they are normally engaged in a context that might include family, friends, neighbours, non-professional and professional carers, along with their legal advisers, spiritual leaders and advocates.

Hence, in making judgements about Living Wills medical staff must endeavour to become acquainted with the broader context in which the document was conceived.

This thought reflects the statement in the Green Paper Who Decides? Making Decisions on Behalf of Mentally Incapacitated Adults (1997, London: HMSO), namely:

‘The advance statement is not … to be seen in isolation, but against a background of doctor/patient dialogue and the involvement of other carers who might be able to give an insight as to what the patient would want in the particular circumstances of the case.’

3.2

Involving relatives and carers and indeed the patient (in so far as their competency will allow) in interpreting a Living Will is in keeping with the common law principle that, in the case of an adult who lacks capacity, the doctor must act in the patient’s ‘best interests’. The same document suggests that in determining ‘best interests’, attention should be paid to:

  • The ascertainable past and present wishes of the person and factors they would have considered if they were able;
  • Encouraging the full participation of the person concerned as far as this is possible;
  • The views of all significant others, both family, friends and all those involved in the person’s care;
  • The need to make sure that the purpose of any treatment is achieved in the least restrictive manner possible.

These criteria have been taken up in the government’s subsequent White Paper Making Decisions.

3.3

With these considerations in place, any decisions about Trust policy with respect to Living Wills should bear in mind the following underlying ethical and philosophical principles:

  • Living Wills exist in order to foster the autonomous agency of individuals who cannot otherwise exercise capacity;
  • The individual person, however, is embedded in a broad social context and patients (in particular those who lack capacity to make decisions about their treatment) must often depend to some extent on those around, both professional and non-professional, in order to exercise their agency;
  • It follows that professionals must pay attention to the views of others involved in the care of their patients; but also professionals must not be prevented from encouraging the agency of patients under their care. Indeed, in seeking the holistic well-being of their patients, professionals should encourage them to take steps to enhance their autonomous agency; this is in keeping with the principle of beneficence;
  • Meanwhile, the Trust must ensure both that the interests of the patients under its care are not compromised (the principle of non-maleficence), and that its staff are not compromised: neither through lack of training, nor through lack of appropriate support.

4. Applying the directives in a Living Will in clinical practice

In determining the best interests of a patient, where the patient has a Living Will, it will be appropriate for clinicians to consider whether or not the legal criteria for a valid Living Will (see 2 above) have been satisfied. In particular, clinicians need to consider whether the condition(s) anticipated in the Living Will are actually those that obtain. Experience of a condition could lead to a change of view over time – this might call into question the validity of a Living Will. While it is recognised that people usually grow to accept disability and may therefore seek to revoke the terms of a prior Living Will this acceptance of disability may not always occur and the Living Will may thus remain valid.

5. Should the Living Will document be offered to patients in hospital or should it be provided only on request?

The consensus in CEAG was that patients should be made generally aware of Living Wills, but they should not be actively offered to all patients who have contact with the Trust. This recommendation is made on the grounds that patients might feel that undue pressure is being brought to bear on them if the Living Will is actively promoted, breaching the principle of non-maleficence and potentially undermining the patient’s trust in their health carers in hospital. Suitable and morally acceptable methods of raising awareness include the use of posters or pamphlets.

Ideally, Living Wills should be part of a patient’s whole management. While involvement of the GP would be ideal in helping patients to complete their Living Wills, the Trust should be able to provide Living Wills and advice relating thereto if requested. Leaflets should be made available describing the purpose and implications of a Living Will. In giving advice to patients, there should be a general discussion about the patient’s values and beliefs before particular and detailed decisions are made; it would appropriate for any such discussions to take place over several meetings and to involve other family members or carers at the patient’s request. Therefore, giving such advice is likely to be time-consuming and staff will require proper training if in fact the Trust undertakes to provide such advice and support. Nevertheless, any clinician must be prepared to offer advice within the bounds of their competence, or to refer to an appropriately informed colleague, if a patient seeks their help. By these means the patient’s autonomous decision-making, in relation to whether they wish to have a Living Will and to the nature of such a document, is enhanced. There is a need to provide information and choice. Appropriate and authentic choices are likely to be made in situations where there is not any immediate urgency. However, if the patient freely requests a Living Will in hospital, the request should be responded to.

6. Recording the existence of a Living Will and its distribution.

Provided that patients give their consent, the Trust has a duty to ensure that the existence and content of the Living Will is made known to key health personnel. Thus, a copy of the Living Will should be sent with the patient’s Discharge Letter to the patient’s GP. A copy of the Living Will should also be kept in the patient’s hospital notes, with a prominent sticker inside the cover indicating that the notes contain a Living Will.

7. Safeguards

7.1 Safeguarding the patient’s autonomy – should staff play an active advisory role?

Ideally independent advice should be available to patients in the Trust, but such advisors should be senior and suitably trained.

It was agreed that a comprehensive leaflet should be made available, along the lines of ‘Advance Medical Directive’ (published by Staywell), describing the nature, purpose and practicalities of a Living Will. The leaflet should include an exploration of values and beliefs to help the patient to make their decisions in the Living Will document.

Since patients are often fearful of hospitals and do not necessarily understand the limits of Do Not Resuscitate decisions, there should be a clear definition of terms in the leaflet and in the Living Will document. The leaflet should make it plain that the hospital staff would act in the best interests of the patient.

7.2 Safeguarding the patient’s autonomy - should family members or carers be involved in discussions relating to a Living Will?

Patients should be encouraged to discuss their Living Will with family members, to avoid future conflicts of opinion regarding the patient’s intentions. This is based on the principle that it is in the patient’s interests to ensure that their wishes would be respected in future.

Trust staff may be called upon to safeguard the patient’s autonomy if s/he wishes to complete the form without support from their family. The patient should be given time for reflection and the patient should be encouraged to involve family when the patient feels that the time is right. It is felt important neither to be proscriptive nor prescriptive.

In patients with mild dementia, the situation may be made more difficult if the family is not there to provide a context to the patient’s life-experience and preferences. Nonetheless, patients must be encouraged to decide for themselves who should be involved in drawing up their Living Wills.

7.3 Safeguarding the patient’s autonomy – the role of the Trust’s solicitor.

Owing to financial considerations, a conflict of interest might arise where the Trust Solicitor is called on to advise on the appropriateness of completing a Living Will. It was agreed that a patient could request a solicitor and should be assisted in so doing, but that the document should not refer to the “Trust” solicitor.

8. Would it be acceptable for a member of staff to witness the patient’s signature?

In order to minimise the risk of undue influence, staff that witness a signature should not be those with day-to-day responsibility, but staff from another area who are at a distance from the patient. Clinicians might attach greater weight to the validity of a Living Will if there is evidence that it has been carefully considered and knowledge of the identity of the witness to the signature might provide such reassurances.

CEAG was uncertain whether the witness of the signature was in fact only required to confirm the patient’s identity in signing or whether the witness was confirming the legitimacy of the process of drawing up the Living Will. This would raise the issue of the person’s capacity to sign the Living Will and staff need to be made aware that they should seek expert advice if they have any doubts about the patient’s capacity.

It seems that if a member of the hospital team were asked to witness a Living Will, there would be a stricter criterion as to what might be expected from the witness than if a lay person acted as a witness. Staff have a duty to ensure that the process is carried out in the proper and appropriate manner. A further consideration is the need to guard against litigation. The Trust should consider the question of the seniority of the member of staff witnessing the document, who will require appropriate skills in assessing capacity.

If the document were only offered on request there would be a lower likelihood of coercion by a person signing their names as witness, but it might be considered that under some circumstances a clinician might wish to initiate thoughts about a Living Will.

It should go without saying that all discussions about Living Wills should be clearly, contemporaneously and accurately recorded in the clinical notes.

9. The contents of the Living Will

9.1 The Preamble

It was agreed that the preamble should contain the following statements:

11.1.1 The Trust wishes to assure you and your carers that under all circumstances the health team will strive to provide what they consider to be the best treatment for you.

11.1.2 This document is to record aspects of treatment that you do not wish to have under specified circumstances.

9.2 A statement of beliefs

CEAG considered whether a statement of the patient’s beliefs should be included in the Living Will. It was felt that caution should be exercised, since the Living Will is a legal document and requires precision; however, space for a free text statement of beliefs and values seems appropriate in case the patient wishes to record such beliefs and values – this would be similar to a standard practise pertaining to Last Will documents. In instances where staff are asked for help a patient with their Living Will, they should be alert to the possibility that a ‘statement of beliefs’ may be in conflict with some components of the remainder of the document.

10. Should there be an option stating: ‘If there is a medically indicated treatment available, my preference would be not to refuse such treatment’.

CEAG members were divided in their views on this matter. It was recognised that an affirmative guidance such as this (as opposed to an advance refusal of treatment) may be more relevant in some clinical scenarios. On the other hand, it could raise unrealistic expectations that future treatments could be demanded, or, alternatively, could engender fear that clinicians might withhold appropriate treatment unless such demands are clearly stated.

11. The duration and validity of a Living Will.

CEAG came to the conclusion that there were no ethical grounds on which to recommend that a time limit should apply to a Living Will. It follows that a Living Will should remain valid until the patient wishes to change it. However, CEAG recommends that the Trust’s information brochure should advise patients who sign a Living Will to review it from time to time. Since ordinary Wills make provision for codicils, they may well be appropriate in a Living Will as well.

12. Should a Living Will be deemed invalid if the patient develops dementia?

CEAG considers that no ethical grounds exist to regard cognitive disturbance as necessarily invalidating a Living Will.

Copyright of Appendix A4 is held by Newcastle upon Tyne Hospitals NHS Trust Clinical Ethics Advisory Group.

Dr Stephen Louw
Consultant Physician and Chair of the Newcastle Upon Tyne Hospitals NHS Trust Clinical Ethics Advisory Group
General Internal Medicine
Level 6
Freeman Hospital
High Heaton
Newcastle upon Tyne
NE7 7DN

Acknowledgements: Membership of CEAG at the time of the above discussions included: Sir Miles Irving, Dr Julian Hughes, Dr Tom Shakespeare, Dr Jill Lothian, Dr Kath Mannix, Miss Clare Abley, Dr Anna Batchelor, Dr Andrew Cant, Dr Nick Plant, Dr Patrick Kestevan, Mrs Mary Midgley, Mr H Thomas, Ms Gill Finlay, Mrs L Simpson, Mr Steve Kirkup provided secretarial support.

The following further information produced by CEAG is available from the Network web site http://www.ethics-network.org.uk/Committee/functions/functions.htm

  • Explanatory Notes for Patients
  • Sample Form