Quality and Safety Committee. Components (eg Jehovah's Witnesses)

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1 Committee Paper Item: QS13/071.1 Name of Committee: Subject: Summary or Issues of Significance Quality and Safety Committee Consent Guidance for Patients who Refuse Blood / Blood Components (eg Jehovah's Witnesses) Situation: The Consent Guidance for Patients Who Refuse Blood /Blood Components (e.g. Jehovah's Witnesses) has been written to maximise understanding between patients who refuse blood components and the health professionals of the Local Health Board in order to ensure correct and legally compliant informed consent processes are used. Background: Health care for patients who refuse blood components at times presents a challenge to healthcare professionals. While most patients will accept medical treatments, procedures, techniques, as well as haemostatic and therapeutic agents that do not contain blood - refusal of blood transfusions is clear and founded upon deep religious convictions. Therefore, this Guidance will assist staff who may become involved in health care decisions involving patients that refuse blood transfusion. Assessment: The guidance was created by the Consent Task & Finish Group sub group of the CECHRG and consulted upon from to changes have been made following this consultation. Legal advice has also been sought from Legal and Risk Services and a number of amendments were made to the guidance. Strategic Theme / Priority addressed by this paper Healthcare Standard addressed Equality Impact Assessment (EqIA) Making it safe, Making it Sound Standard 9 Patient Information & Consent An Equality Impact Assessment has been completed. A full EqIA has not been undertaken. The Health Board recognises that it is important to respect the autonomy of individuals who receive treatment. Patient care will

2 be delivered without discrimination regardless of gender / transgender, race, disability, sexual orientation, age, religion / belief or cultural practice. Information will be presented to all patients, and carers in a way in which they can understand it. There is a need to make sure Healthcare Professionals are aware of their legal, medical and ethical responsibilities when treating adult patients that refuse blood products. Therefore it is important to ensure that patients refusing blood products are clearly identified and are not inadvertently given blood products. This guidance clearly assists the BCUHB provide appropriate management of patients who refuse transfusion. It therefore promotes equality for this very small but important group of patients. Recommendations: To approve :- Consent Guidance for Patients who Refuse Blood / Blood Components (eg Jehovah's Witnesses) Author(s) Presented by Karen Williams-Jones, Consent, Capacity & Ethics Development Manager Dr M Duerden, Acting Medical Director Date of report 19 th March 2013 Date of meeting 4 th April 2013 BCUHB Committee Coversheet v5.01 APPROVED Disclosure: is the operational name of University Local Health Board

3 Version: 0.1 Bwrdd Iechyd Prifysgol Number here e.g. MD04 Consent Guidance for Patients who Refuse Blood / Blood Components (eg Jehovah s Witnesses) Date to be reviewed: September 2016 No of pages: No. of pages Author(s): Karen Williams- Author(s) title: Jones Consent, Capacity & Ethics Development Manager Responsible dept / BCUHB Transfusion Committee directors: Mr Mark Scriven - Dr Brian Tehan Approved by: Quality & Safety Committee Date approved: Date approved Date activated (live): Date becomes live Date EQIA completed: April 2012 This document forms part of the implementation process for the overarching policy on complete here if appropriate or delete this sentence if this does not form part of the process for an overarching policy. Staff should ensure they follow this procedure, with any deviation being risk assessed and escalated through their CPG/ Corporate Function escalation process. - Authors may remove the deviation section of this sentence above, if appropriate (e.g. mandatory non-clinical procedures). Documents to be read alongside this procedure: Purpose of Issue/Description of current changes: MD01 Consent to Examination or Treatment Mental Capacity Act 2005 Code of Practice Medicines Management Policies & Key Documents Patient Identification Emergency Blood Management Plan IV Drug Administration F96 Massive Haemorrhage Pathway PTH/TRW/DC01 Administration of Blood & Blood Components Safeguarding Children All relevant CPG Clinical Guidance / Policy / Pathways First operational: Date the procedure/guideline was first operational Previously reviewed: date date date date date Changes made yes/no: Yes/no Yes/no Yes/no Yes/no Yes/no PROPRIETARY INFORMATION This document contains proprietary information belonging to the. Do not produce all or any part of this document without written permission from the BCUHB. 1

4 CONTENTS 1. Health Board Statement Purpose Scope Background & Introduction Roles and Responsibilities Specific Views on Acceptable and Unacceptable Treatment Acceptable Treatment Matters of Patient Choice Legal Position Adult Refusal to Consent to Blood Transfusion in the Case of a Minor Child capable of giving Informed Consent (Gillick competent) Child unable to give Informed Consent Life Threatening Emergency Consultation and Referral Care of Adult Patients at Risk of or with Major Haemorrhage who Refuse a Blood Transfusion Acceptable and Unacceptable Treatment Consent Agreement to Treatment Actions if there is uncertainty about the refusal of blood or blood products (Patients who are Jehovah s Witnesses) Care of children at Risk of or with Major Haemorrhage whose Parents / Guardians are Jehovah s Witnesses Management Legal Position Before Court Referral Emergency Situations Documentation Requirements Training Evaluation & Monitoring Audit.. 12 CONSULTATION INFORMATION... Appendix 1 - Key Contacts Appendix 2 - How to Seek A Court Declaration Appendix 3 - Decision Making Flowchart Appendix 4 - Parental / Guardian Understanding Agreement Regarding Refusal of Blood Transfusions for Minors Appendix 5 Supplementary Consent Form Refusal of Blood / Blood Components. 2

5 1. Health Board Statement The Health Board recognises that it is important to respect the autonomy of individuals who receive treatment. Patient care will be delivered without discrimination regardless of gender / transgender, race, disability, sexual orientation, age, religion / belief or cultural practice. Information will be presented to all patients, and carers in a way in which they can understand it. 2. Purpose The purpose of this Guidance is to maximise co-operation and understanding between patients who refuse blood components and the health professionals of the Betsi Cadwaladr Local Health Board in order to:- ensure that the patient s beliefs are acknowledged and respected; facilitate and expedite treatment that is acceptable for the patient; ensure clinicians / health professionals are informed of the alternative treatments available. 3. Scope This Guidance provides information for registered healthcare professionals / professionals allied to medicine working (or contracted to work) at the (regardless of setting) and are involved in the management of patients who may require a blood transfusion. An adult is classed as aged 16 years old and above for the purpose of this Guidance. For specific advice relating to Children and young people under 16 years of age see Sections Background & Introduction Health care for patients who refuse blood components at times presents a challenge to the medical community. While most patients will accept medical treatments, surgical and anaesthetic procedures, devices and techniques, as well as haemostatic and therapeutic agents that do not contain blood - refusal of blood transfusions is clear and founded upon deep religious convictions. Therefore, we are adopting a Guidance to assist staff who may become involved in health care decisions involving patients that refuse blood transfusion. Competent adult patients have a fundamental legal and ethical right to determine what happens to their own bodies. This right includes the right to decide what treatment to accept or refuse, including blood transfusions, notwithstanding the potential serious or even fatal consequences. 3

6 To administer blood to a competent adult in the absence of his/her consent, or against their wishes, is unlawful and ethically unacceptable and may lead to criminal and/or civil and/or disciplinary action and/or action by your professional body. There is additional information from the following web addresses: (General Information) (Care Pathway for patients refusing blood). The general clinical approach to the management of the patient who refuses blood or blood products should include; (1) Early identification of the patients and ensuring there is an open individualised discussion about their beliefs and concerns. (2) Counselling the patient over exactly what is involved to ensure there is no confusion over the provision of blood or blood products. (3) Attempt to resolve any issues and operate within this BCUHB guidance including transfer of patient care to another Consultant if required. 5. Roles and responsibilities Chiefs of Staff / Directors Directors are responsible for ensuring that the requirements of this Guidance for the Treatment of Patients who have indicated that they do not wish to receive blood or blood components are effectively managed within their Clinical Programme Group and that their staff are aware of, and implement, the requirements outlined within this protocol, Blood Transfusion Team: Consultant Haematologist, Blood Transfusion Manager, Transfusion Practitioner (TP) as a whole provide information and support for the clinical team involved with patients refusing blood or blood products. Contact Details - Appendix 1. On Call Duty Consultant Haematologist: The On Call Duty Haematologists provides a 24 hour advisory service and can be contacted via your hospital switchboard. Consultant of the Patient: The consultant of the patient needs to be aware that the patient is refusing blood products as early as possible in the plan of care. He/she should be confident in their ability to treat the patients under these circumstances or refer them immediately to a Clinician/ Anaesthetist who has specialist knowledge of this area. Anaesthetist: If the patient is coming for surgery the anaesthetist must be aware as soon as possible. This will allow for adequate planning and discussion with the patient and relevant teams. 4

7 Pre-assessment Unit: Will review all pre op patients and will identify patients that refuse blood and blood products as part of treatment for further assessment and management. Patient Refusing Blood and / or Blood Products: Patients may carry with them documentation known as Advanced Decision to Refuse Specified Medical Treatment Hospital Liaison Committee (HLC) for Jehovah s Witnesses: 24 hour contact (with patients permission) for support in assisting to manage Jehovah s Witnesses Contact Details Appendix Specific Views on Acceptable and Unacceptable Treatment 6.1 Acceptable Treatment Most patients who refuse blood components will usually consider accepting most medical treatments, surgical and anaesthetic procedures, devices and techniques, as well as haemostatic and therapeutic agents that do not contain blood. They accept: Non-blood volume expanders such as crystalloids (eg Saline, Hartmann s, Dextrose) and colloids (eg Gelatin, Dextran, Hetastarch); Techniques such as Hypotensive Anaesthesia, Meticulous Haemostasis and Diathermy Agents. 6.2 Matters of Patient Choice Each patient will decide whether he or she wishes to accept the following as a matter of personal choice. Hence it is essential to discuss whether or not these procedures are acceptable with each patient: Intraoperative and postoperative cell salvage, heart bypass (pumps must be primed with non-blood fluids), haemodialysis and haemodilution. Fractions of plasma or cellular components (eg albumin, immunoglobulins, anti-d, clotting factors, vaccines) Organ transplants and donations Transfusions of whole blood, packed red cells, white cells, plasma and platelets; Preoperative autologous blood collection and storage for later reinfusion. Elective termination of pregnancy. If at the time of childbirth, a choice must be made between the life of the mother and the child, those concerned will arrive at a decision. 7. Legal Position An accurate record of all discussions about consent and treatment options should be documented in the patient s healthcare record. For any advice regarding complex blood transfusion issues please contact the Concerns Team (In Hours - Contact Details Appendix 1) or the Executive Board Member On Call via Switchboard (Out of Hours). 5

8 7.1 Adult Bwrdd Iechyd Prifysgol Please read in conjunction with Appendix 3 - Decision Making Flowchart. A conscious, mentally competent adult (over 16 years old) cannot be given treatment without his or her valid consent. Refusal of treatment can be for reasons which are rational, irrational or for no reason at all. To administer blood in the face of refusal by a competent patient may lead to criminal and / or civil proceedings. Refusal of treatment by a patient should be free from any external influence and may be in the form of verbal communication and/or by carrying a valid and applicable Advance Directive or No Blood Card. All patients accept full legal responsibility for their decision assuming all available alternative strategies for blood conservation have been employed. The Mental Capacity Act 2005 came into force on the 1 st of October 2007 and health professionals should be familiar with the values that underpin the legal requirements of the Act. The Act is intended to be enabling and supportive of people who lack capacity, not restricting or controlling of their lives. It aims to protect people who lack capacity to make particular decisions, but also maximise their ability to make decisions, or to participate in decision-making, as far as they are able to do so. The five statutory principles are: 1) A patient must be assumed to have capacity unless it is established that they lack capacity. 2) A patient is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. 3) A patient is not to be treated as unable to make a decision merely because he makes an unwise decision. 4) An act done, or decision made, under this Act for on behalf of a patient who lacks capacity must be done, or made, in his best interests. 5) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be effectively achieved in a way that is less restrictive of the patient s rights and freedom of action. In the management of an unconscious patient the refusal of blood components status of the patient may be unknown. Nevertheless the majority of patients carry a signed and witnessed No blood card absolutely refusing blood and releasing clinicians from liability arising from this refusal. Many patients have also executed a more detailed health-care advance directive and have lodged a copy with their general practitioner as well as friends and relatives. If there is no evidence of the status of the unconscious patient the clinical judgement of the doctor should take precedence over the opinion of relative and or associates. If serious questions arise regarding the competence of a patient, and in the absence of a clearly applicable advance directive, reference should be made to the Concerns Team (please see section 5 for contact details). The final responsibility for determining whether a procedure is in an incapacitated patient s best interests lies with the health professional performing the procedure. However, it is good practice to 6

9 consult with those close to the patient (eg spouse/partner, family and friends, carer, supporter or advocate) unless you have good reason to believe that the patient would not have wished particular individuals to be consulted, or unless the urgency of their situation prevents this. Best interests go far wider than best medical interests, and include factors such as the patient s wishes and beliefs when competent, their current wishes, their general well-being and their spiritual and religious welfare. In the case of a young person aged 16 to 18 it is possible to provide treatment if it is felt to be in the young persons best interest but this would require referral to the High Court for approval (see section 7.3 below). Relatives and friends CANNOT consent to or refuse treatment for a patient, other than in the case of a minor. 7.2 Refusal to Consent to Blood Transfusion in the Case of a Minor This applies to all patients under 16 years old. The Concerns Team must be contacted in all cases (please see Appendix 1 for contact details). In circumstances where the child s life or health may be deemed to be at risk a number of legal principles and precedents will apply. 7.3 Child capable of giving Informed Consent (Gillick competent) A child who is adjudged capable of giving informed consent to treatment (including blood transfusion) can do so (Consent to Treatment, MDU 1993) and can thus override parental wishes if he or she so chooses. Young people between the ages of 16 and 18 years old are presumed to be competent to give consent (refusal may still be challenged), and should be treated as such unless there is evidence to suggest otherwise i.e. treat like adults. Where a competent child up to the age of eighteen refuses treatment and the treating team consider the refusal not to be in the child s best interests the Health Boards Concerns Team should be contacted and the High Court (Please refer to Appendix 2 How to Seek A Court Declaration) can be asked to authorise the proposed treatment on the child s behalf. 7.4 Child unable to give Informed Consent If at all possible consent for blood transfusion should be obtained from the parents, emphasising that blood transfusion will be avoided if at all possible but that they may have to act in the child s best interests and transfuse if clinically indicated. The parents may feel able to consent to the surgery, but unable to consent to the use of blood. In this situation, it is possible to proceed without the clinicians guaranteeing that they won t use blood. Under such circumstances, parents may be prepared to sign BCUHB Consent Form 2 (for treatment) and a Parental / Guardian Understanding Agreement - Regarding Refusal of Blood Transfusions for Minors (please see Appendix 4). If this is unacceptable to the parents, and they feel unable to proceed with the surgery, an application to the High Court via the Health Boards Concerns Team (High Court Declaration) should be made. Please see Appendix 2 How to Seek A Court Declaration 7

10 7.5 Life Threatening Emergency Bwrdd Iechyd Prifysgol In emergency situations staff may rely on the support of the courts to retrospectively endorse decisions that are taken in good faith and in the best interests of the child concerned. If at all possible in these circumstances the decision to give blood should be made jointly by two consultants and the details comprehensively documented. The Health Board Concerns Team should be informed as early as possible. It is important to note that if a child is below the age of 16 the Court will usually give a retrospective judgement to allow treatment against the parents wishes. If the child is deemed to have Gillick competence then the Court will often go against the wishes of the child by effectively saying the child at that time did not have Gillick competence. However, the older the child the harder this is for the Courts to justify. 8. Consultation and Referral Whenever possible consult with colleagues experienced in the management of patients who refuse a blood transfusion. It is important to ensure that clinical management is optimal before, during and after a procedure, in line with relevant CPG clinical protocols for management of patients who refuse blood or blood products. Arrange immediate referral to another consultant if the consultant to whom the patient was initially referred is uncomfortable with treating a patient who refuses blood components. Jehovah s Witnesses maintain a network of Hospital Liaison Committees who are available at any time to assist with the management of individual Jehovah s Witness patients. The local Committee is based in Liverpool and can be contacted on a dedicated 24 hour number. Please see Appendix 1 for Contact Details. These maintain lists of clinicians prepared in principle to accept Jehovah s Witnesses, and will provide names of such on request on a case-by-case basis 9. Care of Adult Patients at Risk of or with Major Haemorrhage who Refuse a Blood Transfusion Please read in conjunction with Appendix 3 - Decision Making Flowchart. Identify patients in advance, so that any event, which may result in major haemorrhage, can be planned. At preoperative assessment or antenatal booking clinic patients likely to refuse blood transfusion should be identified. The following should be discussed:- 9.1 Acceptable and Unacceptable Treatment Blood components, and cell salvage procedures, which are and are not acceptable, should be discussed and documented in the notes. If the patient has completed a Healthcare Advance Directive this should be included with the case notes. If the patient 8

11 is a child see legal position and Care of children whose parents are Jehovah s Witnesses sections (if applicable). 9.2 Consent Please cross reference to the Health Board s Informed Consent to Treatment or Investigation Policy Ref MD01. The risks and benefits of blood transfusion should be discussed with all patients for whom significant blood loss is likely. If a patient refuses to consent to blood transfusion the responsible surgeon and/or the anaesthetist should hold a full discussion with the patient in the presence of a witness, such as a ward nurse, and the substance of the discussion recorded in the patient notes. In the case of a pregnant woman she should be advised that if massive haemorrhage occurs there is an increased risk that hysterectomy may be required. Undue pressure should not, however, be applied to patients with sincerely held religious or ethical beliefs to prompt abandonment of deeply held core values. Any treatment, which a competent adult / gillick competent child specifically refuses, should be documented on the appropriate place on BCUHB Consent Form 1 (with further detail in the patient s healthcare record if necessary) and the Supplementary Consent Form Refusal of Blood / Blood Components. Whatever the beliefs of the clinicians involved, if a competent patient being of sound mind, refuses to consent to blood transfusion such treatment should not be administered unless the patient changes his/her decision. Please see legal position Section 6. Both the surgeon and the anaesthetist must sign the consent form to indicate willingness to treat the patient within the confines of the limited consent. A team sensitive to the beliefs of patients who refuse blood components should preferably undertake surgery. 9.3 Agreement to Treatment Just as the patient has a right to refuse certain treatments, a refusal of blood transfusion may shift the perceived risk-benefit ratio for certain procedures. Hence, even if the patient accepts the risks as presented, the originally designated surgeons and anaesthetists may, for planned procedures, decline to undertake the case. If so, they should attempt to refer the case to suitably qualified colleagues prepared to undertake it. The position for emergency cases is different. The clinicians responsible may request a colleague s assistance if they prefer not to be involved. However, where there is no alternative and where delay would result in significant morbidity or mortality, they must offer the most appropriate care within the confines of the patient s consent. 9

12 9.4 Actions if there is uncertainty about the refusal of blood or blood products (Patients who are Jehovah s Witnesses) Most patients who do refuse blood or blood products will carry with them a clear, signed and witnessed advance decision card prohibiting blood transfusions and releasing clinicians from any liability arising from this refusal. Examples for this are Jehovahs Witnesses, although not all members of this religious group refuse blood products. Such patients may have also a more detailed healthcare advance decision and have lodged a copy with their GP (who should be contacted) or family and friends.if an applicable and valid advance decision is produced, then this should be acted upon in accordance with the patient s wishes. If the patient does not have capacity or if an applicable advance decision cannot be produced, the clinical judgement of a doctor should take precedence over the opinion of relatives or associates and the patient should be treated as if their status over blood or blood product refusal is unknown. It should not be assumed that the adult patient will refuse blood or blood products simply because they belong to a particular religious group. 10. Care of children at Risk of or with Major Haemorrhage whose Parents / Guardians are Jehovah s Witnesses This is designed to maximise co-operation and understanding between Jehovah s Witnesses and Consultants and teams caring for children. It acknowledges that Witness parents actively seek medical care for their children Management It is essential to establish the parents personal views on acceptable and unacceptable procedures and treatments. Despite the fact that the medical team and the Jehovah s Witnesses may have different value systems, both parties should respect each other for having the best interests of the child at heart. It is inappropriate and unconstructive to engage in debate over the morals, ethics and logic of patient decisions based on belief. Hence, the paediatric team will fully explore its options for utilising bloodless medicine and surgery in order to treat without recourse to allogenic blood or primary blood components. This should include careful assessment of the benefits and risks of all management options followed by a detailed discussion with the parents. The circumstances in which blood transfusion would be required should be identified and the parents advised that consent for the whole procedure, which may include transfusion, is required. The timing and length of these deliberations will be determined by the Consultant s assessment of the urgency of the requirement for treatment Legal Position (also see paragraph 7) All children / young people (16-18 years old) referred for surgery whose parents are Jehovah s Witnesses and refuse blood transfusion should be discussed with the Concerns Team. 10

13 Where alternative treatment acceptable to the parents is not available or would be ineffective and the child is at risk of dying or catastrophic injury without the treatment an application to the court should via the Concerns Team in working hours) or the On Call Manager (out of hours). Please see Appendix 2 How to Seek A Court Declaration or contact the Concerns Team 10.3 Before Court Referral The parents or guardian and patient (depending on age and maturity) should be notified immediately of such intended action and invited to any case conference. Referral should not take place without the support of a minimum of two practitioners of Consultant status and unless or until the following questions have been addressed: Have all non-blood medical management options been fully explored? Have the risks of using blood been fully considered? Is there another Children s Hospital willing to treat without blood? Is the patient a mature minor ( Gillick competent )? Is there a consensus that a true emergency exists? if yes, see below Have the parents been asked if they wish to contact the Hospital Liaison Committee(HLC) for assistance?- see Appendix 1 HLC Contact Details Emergency Situations In emergency situations, staff can make a retrospective application to the court to endorse a decision to give a blood transfusion without consent, taken in good faith, and in the best interests of the child concerned. The Welsh Government Guidance (2008) states that a reasonable body of medical opinion would support the treatment of giving blood. For the purposes of this Guidance this will be a decision made jointly by two consultants. In all circumstances ALL alternatives and possibilities must have been considered beforehand and fully documented in the patient notes. Please contact the Concerns Team (in working hours) or the On Call Manager (out of hours). Contact details Appendix Documentation Requirements Where applicable for Adults / Gillick Competent Children, a Supplementary Consent Form Refusal of Blood / Blood Components should be completed in addition to BCUHB Consent Form 1 (with further detail in the patient s healthcare record if necessary) in accordance with the Health Board s MD01 Consent to Examination or Treatment Policy. In addition to this form the Health Board has developed a Parental / Guardian Understanding Agreement - Regarding Refusal of Blood Transfusions for Minors which should be completed in addition to BCUHB Consent Form 2 in conjunction with the parent (s) / guardian (s). (Please see Appendix 4) - Available to download from the BCUHB Intranet site. 11

14 Completed forms should be kept with the patient s healthcare record. Any changes to a form, made after the patient has signed the form, should be initialled and dated by both the patient and healthcare professional. Where an advance refusal is to be relied upon or rejected, a full explanation must be entered into the case healthcare record and countersigned by the health professional and, where possible, a second health professional. The capacity of the patient needs to be reviewed regularly please see the Reference Guide - Consent for Examination or Treatment and section 7.1 of this Guidance. 12. Training Teaching on the principles and practical aspects of this Guidance will be included in the Consent & MCA Seminars All health professionals joining the Health Board will be made aware of their responsibilities under this Guidance, during their staff Orientation Programme. Reference to the individual's appropriate Professional Body should be made in order to clarify professional responsibility. Blood transfusion training sessions. 13. Evaluation & Monitoring Review Monitoring of this Guidance and its application in practice will take place through the following mechanisms: Regular review and its application in practice by CPG The Health Boards Datix Incident Reporting System The Health Boards complaints and litigation monitoring systems Clinical Programme Groups Risk Management process. The responsibility for ensuring that this monitoring is carried out and is appropriately reported lies with Clinical Programme Groups. 14. Audit Clinical Programme Groups will ideally take on the overall responsibility of auditing the process in the near future to ensure compliance with this Guidance. Audit reports will form part of the Health Board s assurance framework and will be used for the patient safety performance management assessment process. 12

15 Consultation Bwrdd Iechyd Prifysgol Members of the Working Group: Name Title Karen Williams-Jones Consent, Capacity & Ethics Development Manager Dr Karen Mottart Consultant Anaesthetist Jenny Rodger Blood Transfusion Nurse Rachael Surridge Service Manager,Haematology, Transfusion & Phlebotomy Tom Gregory Jehovah's Witness Hospital Liaison Committee Adrian Thomas Assistant Director of Therapies & Health Sciences Alister Ellis-Jones Pharmacist Engagement has taken place with: Clinical Ethics, Capacity and Human Rights Core Group Medical Director Transfusion Committee Chief's of Staff Associate Chief's of Nursing Associate Chief's of Operations Director of Nursing School of Nursing Jehovah's Witnesses Hospital Liaison Committee Service User Experience and Information Operational Group Patient Satisfaction and Information Manager Consultants Risk Management Sub-Committee Medicines Management Committee Welsh Health Legal Services Date Consulted

16 Appendix 1 Useful Contacts Blood Transfusion Team Lead Nurses Telephone: East : Internal Central: Internal West: Hospital Liaison Committee (HLC) for Jehovah s Witnesses This is a group of Jehovah s Witnesses who are happy to be contacted regarding alternative care and/or locating co-operative doctors in other facilities in addition to providing any information from the Jehovah s Witnesses reference sources. The patient / parent should be asked if they want to contact and have the assistance of the Hospital Liaison committee. HLC - 24 hour contact number: or (national helpline for Jehovah s Witnesses issues) Concern Teams Telephone: East Central West

17 Appendix 2 Bwrdd Iechyd Prifysgol How to seek a court declaration 1. If you need to obtain legal advice or apply for a court ruling in relation to a complex blood transfusion issues you should contact your divisional Concerns Team (contact details listed below). 2. Out of office hours, you should contact the Senior Manager on-call, who will contact one of the Health Board s Solicitors on your behalf. 3. You should ensure that you have all the relevant information about the case to Hand so that you can brief the Solicitor appropriately. You should also keep a clear written record of any legal advice you have been given. 4. Where a decision is made to apply to a court the lead clinician should, as soon as possible, inform the patient and his or her representative of the decision and of his or her right to be represented at the hearing. The patient s solicitor should be informed immediately and, if practicable, should have a proper opportunity to take instructions and apply for legal aid where necessary. 5. There may be occasions when the situation may be so urgent, and the consequences so desperate, that it is impracticable to attempt to comply with these guidelines. Where delay may itself cause serious damage to the patient s health, or put their life at risk, then rigid compliance with these guidelines would be inappropriate. Further legal advice could be sought if the situation allows. In these cases it is essential to provide adequate documentation and reasons for cause of action undertaken. Any deviation from the MCA Code of Practice and the reasons for this must also be clearly recorded. 6. The Court of Protection deals with serious decisions affecting personal welfare matters, including healthcare, which were previously dealt with by the High Court. Case involving: cases where there is doubt or dispute about whether a particular treatment will be in a person s best interests (includes cases involving ethical dilemmas in untested areas) should be referred to the Court for approval. The Court can be asked to make a decision in case where there are doubts about the patient s capacity and also about the validity or applicability of an advance decision to refuse treatment. Please contact:- Head of Investigations and Redress Concerns Team Ysbyty Gwynedd Penrhosgarnedd Bangor Gwynedd LL57 2PW Telephone: East Central West ConcernsTeam.bcu@wales.nhs.uk 15

18 Appendix 3 Decision Making Flowchart 16

19 17

20 Appendix 5 Supplementary Consent Form Refusal of Blood / Blood Components 18

21 19

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