THE NEWCASTLE UPON TYNE HOSPITALS NHS TRUST LIVING WILLS (ADVANCE REFUSAL OF TREATMENT) Effective: May 2002 Review May 2005

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1 THE NEWCASTLE UPON TYNE HOSPITALS NHS TRUST LIVING WILLS (ADVANCE REFUSAL OF TREATMENT) Operational Policy 19 Effective: May 2002 Review May Summary 1.1 This document provides information and guidance on dealing with patients who wish to use or to make a Living Will (Advance Refusal of Treatment) whilst they are under the care of Newcastle upon Tyne Hospitals NHS Trust. 2. Definition: what is a living will? 2.1 A Living Will is often also referred to as an Advance Directive, but for consistency throughout this procedure the term Living Will is used. 2.2 It is easier to say what a living will is not rather than what it is: It does not dispose of property It does not appoint executors It is different from a last will and testament and does not refer to events after the death of an individual 3. Is the living will legally binding? The legal standing of derives from case law. It is clear that in England and Wales an advance refusal of medical treatment is legally binding provided: The document is clearly established and was signed by the patient when mentally capable of making that kind of decision. The patient s refusal of future treatment is applicable to the current circumstances It was the patient s own decision, and was not made under undue pressure 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 criteria for a valid Living Will have been satisfied Whether the condition(s) anticipated in the Living Will are those that obtain 5. Identifying patients who have made a living will Page 1 of 6 (OP 19)

2 5.1 Most patients who have a Living Will, will have chosen to do this before they come into hospital and at a time when they are reasonably well. 5.2 All patients should be asked as part of the admission assessment process, whether they have a living will and if so, where it is lodged. 5.3 If the patient has a living will, this fact should be recorded in a prominent place in the admission record and if possible, a copy obtained from the patient to hold in the medical record. An alert sticker obtainable from the Medical Records Department should be used on the case note file to highlight the existence of the Living Will. In addition, with the patient s consent, a copy of the Living Will should be sent to the patient s GP with the Discharge Letter. 5.4 A patient with a living will should be offered the opportunity to discuss its implications with a senior member of the medical team the patient s consultant or his/her nominated deputy. 6. Patients requesting to make a living will 6.1 It is preferable for patients to make a living will prior to admission and the opportunity to make a Living Will should not be actively offered to patients in contact with the Trust. This is 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 hospital carers. It is recognised, however, that there may be circumstances when a patient wishes to make or amend a Living Will whilst in hospital for treatment. 6.2 If a patient, while under the care of Newcastle upon Tyne Hospitals NHS Trust, asks a member of staff if they can make a Living Will, the patient should be advised to receive independent advice/counselling and preferably advised to seek legal help from a solicitor. Discussion about must be approached in a sensitive manner. Medical staff must be notified of the patient s request. 6.3 If the patient does not have a solicitor, they should be advised that the hospital can contact a Solicitor to assist in drawing up a Living Will. The patient should also be advised that legal fees for this will be charged to them.where assistance is needed in contacting a Solicitor, authorisation should be obtained from the Patient Services Director or Senior Manager on-call. 6.4 It is the patient s responsibility to draft a Living Will, and it is recommended that this be done with medical advice and counselling as part of a continuing doctor/patient dialogue, even though patients have a legal right to decline specific treatment, including life-prolonging treatment. Whilst the document needs to be drawn up by the patient with the advice of their doctor, the legal format is important and so the patient should also seek the advice of a solicitor as outlined in paragraphs 6.2 and 6.3 above. 6.5 Should it be necessary for a Trust employee to sign the Living Will document as witness of the patient s signature, this role should be undertaken by a Consultant who is not directly involved in the care of the patient, or by a Senior Manager. Page 2 of 6 (OP 19)

3 7. Guidelines for producing a living will 7.1 Detailed records should be kept by staff of all discussions concerning a patient s wish to make a Living Will. 7.2 The physical and mental capacity of the patient at the time the Living Will is made should be recorded by a suitably medically qualified person so that there is positive evidence of the patient s capacity at the time. 7.3 The patient should be provided with a copy of the Trust information leaflet on Living Wills, describing their purpose and implications. Opportunity should then be provided for the patient to discuss the Living Will in detail with their clinician. This should begin with a general discussion about the patient s values and beliefs before particular decisions are made. It may be necessary for discussions about the Living Will to take place over several meetings and also to involve other family members or carers at the patient s request. Where the patient does not wish to involve family or carers, this wish should be respected and staff should ensure that the patient s autonomy is safeguarded. All consultant medical staff should, in principle, be prepared to respond to a patient s request for discussion of a Living Will, referring to other colleagues as necessary where the discussion falls outside their current competence. 7.4 The Living Will should be drafted in clearly understandable language and should be witnessed by independent persons. The form attached to this policy should be completed in all instances. Explanation of the form should always be available for the patient prior to its completion. 7.5 Care must be taken to ensure that the patient is not subjected to influence from persons who have a conflict of interest and who may stand to benefit from the patient s death. Views of relatives can be taken into account but must not be allowed to overrule the patient s stated wishes and the patient s best interests. 7.6 Where there are cases of difficulty, a declaration may be obtained from the Court as to whether the Living Will should be followed. It is essential that legal advice be obtained in cases of difficulty. 7.7 No person has a legal right to accept or decline treatment on behalf of another adult (i.e. aged over 18). Nomination by the patient of a person to act as a Health Care Proxy may be a helpful development in communicating the patient s views when the individual is no longer capable of expressing these. This may, for example, be a named family member, a partner or friend, whose name is recorded on an appropriate Living Will document. The legal status of a Health Care Proxy is uncertain, but doctors should in practice pay attention to what the proxy says and consider their opinion before making a decision about the patient s care. The Health Care Proxy cannot insist on treatment which the health care team feels is against the best interests of the patient. 7.8 At such time as a decision has to be made as to whether to comply with the wishes of the patient as expressed in a Living Will, it is essential that a relevant health professional determines whether the patient s clinical Page 3 of 6 (OP 19)

4 circumstances are significantly different from those envisaged when the Living Will was signed. Steps must be taken to ensure that the patient has not changed his/her mind between making the Living Will and the decision by health professionals to act upon it. This is particularly important where there has been significant change in the patient s medical condition or circumstances, or a long time has elapsed since making the Living Will; also where there has been any important medical development relevant to the patient s condition or treatment. 7.9 All discussions about should be clearly, contemporaneously and accurately recorded in the patient s clinical notes. 8. Monitoring and Review This policy will be reviewed every 3 years. Comments, queries and suggested amendments should be addressed to the Head of Risk Management. Person Responsible for Review: Head of Risk Management Page 4 of 6 (OP 19)

5 LIVING WILLS (ADVANCE REFUSAL OF TREATMENT) APPENDIX 1 - MEDICAL ETHICS PRINCIPLES 1. The key principle of medical ethics that supports the use of 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. It is recognised that most people, whilst being individuals in their own right, are part of a social framework including their family, friends, neighbours, non-professional and professional carers, along with their legal advisers, spiritual leaders and advocates. The individual s view of autonomy may be influenced by their social, racial or religious backgrounds. In addition, experience of a condition could lead to a change of view over time this might call into question the validity of a Living Will. However, while people usually grow to accept disability, even if they had not previously imagined that they would be able to do so, this may not always be true. Hence, in making judgements about, 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. 2. This 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 Page 5 of 6 (OP 19)

6 3. With these considerations in place, any discussions about should bear in mind the following underlying ethical and philosophical principles: 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 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. Page 6 of 6 (OP 19)