Clinical Guidance for the End-of-Life Care of Patients who are Receiving n-invasive Ventilation for Respiratory Failure Associated with Motor Neurone Disease Version: V1.0 Ratifying Committee: Schedule/Unscheduled Care Board Date Ratified August 2014 Name of author Multi Name of Responsible Individual D. Freeman, LTVS Date Published on Intranet Review Date August 2017 Target Audience Organisation wide Equality Impact University Hospital of South Manchester NHS Foundation Trust (UHSM) strives to ensure equality of opportunity for all service users, local people and the workforce. As an employer and a provider of health care, UHSM aims to ensure that none are placed at a disadvantage as a result of its policies and procedures. This document has therefore been equality and impact assessed by the Schedule/Unscheduled Care Board to ensure fairness and consistency for all those covered by it regardless of their individuality. The results are shown in the Equality Impact tool at Appendix 3. Version Control Sheet Version Number Issue Date Revisions from Previous Issue Date of Ratification by the Committee 1
Contents Section 1. Introduction Pg 3 2. Purpose of document Pg 3 3. Definition of key terms used Pg 3 4. Duties and responsibilities of individuals and groups Pg 4 5. n-invasive Ventilation (NIV) In Patients with Motor Neurone Disease Pg 5 6. Advance Care Planning Pg 8 7. Advance Directives to Refuse Treatment (ADRT) Pg 8 8. The Process of withdrawing NIV Pg 10 9. Involvement of the multi-disciplinary team Pg 11 10. Anticipatory Prescribing Pg 11 11. Practicalities Pg 11 1. Useful Contacts Appendices 2. Plan for dissemination of the Clinical Guidance for The End-of-Life Care of Patients who are Receiving n-invasive Ventilation for Respiratory Failure Associated with Motor Neurone Disease document. 3. Equality impact assessment of the Clinical Guidance for The End-of-Life Care of Patients who are Receiving n-invasive Ventilation for Respiratory Failure Associated with Motor Neurone Disease document 4. References 5. Acknowledgements 2
1. Introduction The NICE guidance on n-invasive Ventilation and Motor Neurone Disease (MND) was published in July 2010 and there has already been an increase in referrals to the Long Term Ventilation Service (LTVS) at University Hospital South Manchester (UHSM) in response to this. The NICE guidance also identifies the obligation for professionals to provide good end of life care to this group of patients. This has proved challenging due to the complexity of the condition and the lack of experience of dealing with highly complex ventilation at the end of life in the community and other care settings. University Hospital South Manchester provides a tertiary service for those who are suffering from respiratory failure and who require long term non-invasive ventilation. The service assesses patients, sets up their ventilation equipment and offers them ongoing support. The number of patients who are prescribed non-invasive ventilation is increasing and, as such, more people are reaching the end of their lives while using or depending on non-invasive ventilation. These patients may be in hospice, hospital or home settings at this stage and it is imperative that we ensure that this guidance is useful and applicable to all those who are faced with providing care for patients in this situation. 2. Purpose of the Document The purpose of these guidelines is to provide guidance for staff involved in caring for patients on non-invasive ventilation at the end of life. The document is designed to provide guidance for those in the long term ventilation team when managing this highly complex situation themselves, or, providing support to those in other settings. This guidance will therefore have a wider remit being applicable to community, hospital and care home settings. It should provide a resource to professionals. It should give guidance for the care of those patients who die with non-invasive ventilation in place, those who decide to stop noninvasive ventilation and for those patients where the clinical decision is made to stop ventilation. 3. Definition of Key Terms Used 3.1 Motor Neurone Disease Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of these neurones leads to weakness and wasting of muscles, causing reduced power in the limbs and difficulties with speech, swallowing and breathing. Eye movements, bladder, bowel and sexual function are generally unaffected. Intellect, memory, sight and hearing are also usually preserved. 3.2 n-invasive Ventilation n-invasive Ventilation (NIV) is a form of mechanical assistance with breathing that does not require the patient to be intubated. 3
BiPAP (bilevel positive airway pressure) provides two levels of airway pressure: inspiratory positive airway pressure (IPAP) and a lower expiratory positive airway pressure (EPAP) for easier exhalation. Respiratory Failure is inadequate gas exchange by the respiratory system resulting in either low oxygen levels, high carbon dioxide levels or a combination of both. Anticipatory Prescribing in palliative care is the provision of medications for distressing symptoms prescribed and made available prior to the symptoms occurring. In the community setting this will mean that these medications are in the patient s house prior to their requirement. Refer to the local Palliative Care Pain and Symptom Management Guidelines. Advance Care Planning is a plan made between a person and their care providers regarding the person s care in the future and at the end of life. Advance Decision to Refuse Treatment (ADRT) is the decision of a patient to refuse specific treatments offered to them and can relate to specific circumstances. When it is valid it is legally binding. 4. Duties and Responsibilities of Individuals and Groups 4.1 Legal and Statutory Duties and Responsibilities The organisation is subject to a number of legal, statutory and good practice guidance requirements, covering a wide range of subjects. In order to meet these requirements and to be able to demonstrate sound management within the constraints of the existing legislation it is necessary to have clear operational policies and procedures. 4.2 Chief Executive The Chief Executive is responsible for ensuring safe practices for service users and staff. 4.3 Long Term Ventilation Service (LTVS) The long term ventilation service is responsible for: The ongoing care and management of patients with MND receiving noninvasive ventilation Ensuring that that patients are aware of their end of life choices regarding ventilation Providing highly specialist support and advice to other health care professionals on how to care for these patients appropriately at the end of life Monitoring the implementation of these guidelines 4.4 The Palliative Care Team The palliative care team is responsible for: Advising professionals and patients regarding advance care planning Providing end of life advice and support to staff and patients 4.5 Other Clinical Staff 4
Other clinical staff could include community teams or hospice teams. All professionals providing care to the patient are responsible for: Adherence to the advance care plan Supporting carers and families Regular review of the patient and appropriate clinical interventions 5. n-invasive Ventilation in Patients with Motor Neurone Disease Respiratory muscle weakness resulting in respiratory failure is a major feature of Motor Neurone Disease, and is a strong predictor of quality of life and survival. The National Institute for Clinical Excellence (NICE) has issued guidelines outlining which patients with Motor Neurone Disease should be assessed for and offered non-invasive ventilation as a standard part of their care. Although NIV can be life prolonging the patient s illness will continue to progress and the NICE guidance also highlights the need to discuss and plan for end-of-life care at an appropriate time. The NICE guidance recognises the good symptom control that non-invasive ventilation can offer those at the end of life but also encourages development of strategies to withdraw non-invasive ventilation if the patient wishes. The NICE guidance identifies a number of points within the care pathway when opportunities arise where end of life care needs can be raised with a patient and encourages advance care planning, advance decisions and discussion of withdrawal strategies. There is information available on the NICE website for patients and carers https://www.nice.org.uk/guidance/cg105/informationforpublic and there is also useful information available from the Motor Neurone Disease association (MNDa) regarding the benefits and limitations of non-invasive ventilation and encouraging patients to consider advance care planning. Although full guidance on advance care planning and advance decisions are beyond the remit of this guidance, discussing and encouraging patients to consider options such as appointing a Lasting Power Attorney, or Advance Decisions to Refuse Treatments mean that should the patient lose capacity those who are making decisions are more likely to achieve the patient s wishes. Additional information is available in Sections 6 and 7 of these guidelines. 5.1 Continuing n-invasive Ventilation at the End of Life Patients suffering with Motor Neurone Disease and respiratory failure can experience a significant amount of respiratory distress at the end of life due to respiratory muscle weakness. For the majority of patients this can be controlled by continuing with non-invasive ventilation until after the patient has died, as the ventilation will provide a degree of symptom control. This scenario will be the case for the vast majority of patients and indeed many patients will wish to leave the non-invasive ventilation on during the last days and hours of their life and there are no contraindications to doing this. Provision should still be made for symptoms that may occur and provision of symptom control measures including anticipatory prescribing and syringe drivers should be made. Prescribing and use of medications should continue in the same way as they would for any patient and the NIV should just be considered as part of the baseline for that patient. If a patient dies whilst using non-invasive ventilation the ventilator will continue to deliver breaths at its preset rate. It may also result in the triggering of alarm settings on the ventilator. This should be explained to the family and those who are providing care for the patient prior to the patient s death. Once there is no palpable pulse, absence of heart 5
sounds, no spontaneous breaths and the patient is breathing at the back-up rate of the ventilator then the ventilator can be switched off and removed. Death should then be confirmed as per the verification of death procedure in that area. In these circumstances death should be confirmed as soon as possible so that the ventilator can be removed and minimise distress to those caring for the patient. The Long Term Ventilation Service should be informed of the patient s death as soon as possible and they will arrange for the ventilation equipment to be retrieved. 5.2 Withdrawal of n-invasive Ventilation Withdrawal of non-invasive ventilation in patients with Motor Neurone Disease may be considered in several different circumstances, which are described below. Once a decision has been made to withdraw non-invasive ventilation, the process to be followed is the same, and is described in section 6. 5.2.1 The patient requests to discontinue their non-invasive ventilation. It is important that when discussing and/or initiating non-invasive ventilation that a discussion takes place about how much treatment the patient would want and in what circumstances they might decide that they no longer wish to be non-invasively ventilated. It is preferable to initiate the discussion at an earlier stage rather than in the last few days of life, although the patient s views may change as the disease progresses. Patients should be made aware of the options to create an advance care plan (Section 6). If a patient requests to discontinue their non-invasive ventilation, the reasons for the request should be explored and the implications considered. The patient s capacity to make such a decision should be considered. Capacity to make decisions is situation and time specific. Provisions to optimise that patient s ability to make decisions should be made, for example communication aids made available and the impact of drugs, metabolic disturbance and sensory impairment minimised. A patient should always be assumed to have capacity as a first principle. If there is no impairment in the function of the patient s mind or brain they will not lack capacity under the Mental Capacity Act (2005). To demonstrate capacity the patient needs to: 1. Understand the information relevant to the decision to remove the non-invasive ventilation. 2. Be able to retain this information and process it. 3. Weigh up the pros and cons and come to a decision. 4. Communicate their decision. Patients should be advised that withdrawal of NIV is likely to lead to their death, potentially in a matter of minutes but sometimes extending to a few hours or even days. A competent patient is entitled to make such a decision. However, caution is advised if the request comes out of the blue; further discussion would be required to ensure that it is the patient s considered and voluntary decision and an explanation for the need for planning should be given. A patient s request for withdrawal of non-invasive ventilation may cause considerable concern for some members of the patient s family or healthcare professionals and managers, as the patient s choice may be seen by some as tantamount to assisted suicide. 6
Depending on the level of the patient s disability they may require help to remove the ventilator in order to achieve their decision. 5.2.2 The Patient has a Lasting Power of Attorney for Health A patient may have appointed a decision making proxy to make healthcare decisions on their behalf using a Lasting Power of Attorney for Health (LPA). A Lasting Power of Attorney is a legal document, registered with the Office of the Public Guardian, that allows a nominated person (or persons) to make decisions on the patients behalf should they patient loose capacity; the attorneys decisions are as valid as if the person themselves were making that decision. If a patient lacks capacity to decide whether to withdraw their non-invasive ventilation this decision may be made with their attorney. The attorney can only consent to or refuse life prolonging treatment on the person s behalf if this has been specifically stated as part of the Lasting Power Attorney. The attorney can only act in the patient s best interest as set out in the Mental Capacity Act (2005); anyone with concerns about the attorney s decision can apply to the Court of Public Protection for a decision while continuing treatment. 5.2.3 The Patient has an Advance Decision to Refuse Treatment (ADRT), which outlines circumstances in which they would want their non-invasive ventilation to be withdrawn. If a patient who is no longer competent has an ADRT which outlines circumstances in which they would want their non-invasive ventilation to be withdrawn, the advance decision needs to be assessed for its validity and applicability (please see section 6 for guidance on Advance Care Planning and section 7 for guidance on ADRT). If it is valid, and the circumstances outlined apply, then non-invasive ventilation should be withdrawn in accordance with the patient s previously expressed wishes. 5.2.4 A Best Interest Decision is made on Behalf of an Incompetent Patient If a patient is dying and lacks capacity, despite all measures to maximise capacity having been made, in some cases it may be appropriate to give consideration to discontinuing their non-invasive ventilation. This could be a clinical decision because of problems with the patient-ventilation synchronisation, secretion management or burdensome distress caused by some aspect of non-invasive ventilation. In these cases a formal best interest decision may need to be made. A best interest decision requires those making decisions on behalf of the patient to consider the things that the person would take into account if they were making the decision. It requires consideration of the benefits and burdens of continuing the intervention and any alternatives available. In order to make sure the patients interests are best represented it often involves many people from the multidisciplinary team and the patients relatives, friends, carers or others who can represent the views of the patients. The decision making process should be documented as well as the outcome of the decision. Again, best interest decisions are time and decision specific and as such should undergo review. In the event there is conflict between decision makers or there is no one to represent the views of a patient and Independent Mental Capacity Advocate (IMCA) can be appointed. 7
6 Advance Care Planning In 2006 the NHS End of Life Care Strategy published guidance for professionals regarding advance care planning. Advance care planning is a process between a person and their care providers to establish their wishes for the future. It usually takes place in the context of an illness during which a patient may lose capacity or have difficulty communicating their wishes. Discussions of this nature should be documented, regularly reviewed, communicated to others involved in the patients care and depending on the patient s wishes, family and carers. Advance care planning can take many forms. The most formal form of advance care planning is to appoint a Lasting Power of Attorney for Health. This is a statuary form of establishing an attorney to act on the patients behalf created by the Mental Capacity Act of 2005. It requires registration with the Office of the Public Guardian. Although this option may initially appear more of undertaking once it is in place then if the patient does lack capacity the process of how to make decisions on their behalf is unambiguous. Although Advance Decisions to Refuse Treatment (ADRT) are legally binding, they are only valid in the circumstances set out within the document (see Section 7 for further consideration of ADRT). Another way for a patient to express their preferences for the future can be through a statement of wishes and preferences. This is a written, recorded or narrative document that states the patient s values in both clinical and non-clinical circumstances. A common model for a statement of wishes and preference document is the Preferred Priorities of Care Document. While it is not legally binding it can be used as an account of the person s wishes when a person loses capacity and best interests need to be established. As part of the End of Life Care Strategy there are a number of resources for professionals and patients relating to Advance Care Planning: See appendix 1. 7 Advance Decisions to Refuse Treatment (ADRT) While forming part of advance care planning, Advance Decisions to Refuse Treatment (ADRT) deserve special attention as an understanding of them is essential in providing patient choice at the end of life and ensuring that an advance decision is legally valid. An ADRT is a clear set of written instructions made by a person over 18 who has capacity, on the declining, withholding or withdrawing of treatment in the future in the contemplation of a time when that person lacks capacity or lacks consciousness (and therefore the ability to consent) in the future. An ADRT only becomes active when the person has lost capacity for the decision at hand, otherwise there should be a normal consent process. If and when the circumstance occurs where the ADRT becomes active, and it is valid, it has the same effect as a current decision that is made by a person with capacity and therefore health care professionals are obliged to follow the decision. It is essential that when the ADRT becomes active there is a check to make sure it is legally valid. In the event that the patient lacks capacity but the ADRT is not valid, the advance decision can still be considered as an indication of the patient s views & wishes, and taken into account within a best interests meeting. The following check list is taken from the End of Life Care Strategy document: 8
Always assume the person has capacity to consent to or refuse treatment. You are required to maximise the person s capacity to facilitate communication Question Yes / 1 Does the person have the capacity to give consent to or refuse treatment him or herself, with appropriate support where necessary Is the Advance Decision Valid? 2 Has the person withdrawn the advance decision? (this can be done verbally or in writing) 3 Since making the advance decision, has the person created a lasting power of attorney for health (LPA) giving anybody else the authority to refuse or consent to the treatment in question? 4 Has the person done anything that is clearly inconsistent with the advance decision regarding his/her fixed decision? Is the Advance Decision Applicable? 5 (a) Does the advance decision specify which treatment the person wishes to refuse? (b) Is the treatment in question that specified in the advance decision? 6 If the advance decision has specified circumstances in which it is to apply (see question 3 above), do all of those circumstances exist at the time that the decision whether to refuse treatment needs to be made? (N.B. It is possible for a person to decide that the advance decision should apply in all circumstances) 7 Are there reasonable grounds for believing that circumstances exist which the person did not anticipate at the time of making the advance decision and which would have affected his/her decision had s/he anticipated them? Life Sustaining Treatment 8 Is the decision both valid and applicable according to the criteria set out above? 9 Yes: The person has capacity to make the decision therefore the advance decision is not applicable : continue with checklist YES: This is not a valid advance decision. Make sure that you have identified and recorded the evidence that the person withdrew the advance decision. NO: Continue with check list YES: This is not a valid advance decision. The donee(s) of the LPA must give consent to or refuse the treatment. The LPA decision must be in the person s best interests. NO: Continue with check list YES: This is not a valid advance decision. It is important to identify what the person has done, discuss this with anybody close to the person, explain why this is inconsistent with the advance decision regarding his/her fixed decision, and record your reasons. NO: The advance decision is valid. Continue with the checklist. YES: to both (a) and (b): Continue with the checklist NO: This is not an applicable advance decision YES: Continue with the checklist NO: This is not an applicable advance decision YES: If such reasonable grounds exist, this will not be an applicable advance decision. It is important to identify the grounds, discuss this with anybody close to the person, and identify why they would have affected his/her decision had s/he anticipated them, and record your reasoning. NO: Continue with the checklist YES: Continue with the check list NO: This is not a binding advance
9 In your opinion is the treatment in question necessary to sustain the person s life? 10 Does the advance decision contain a statement that it is to apply even if the person s life is at risk? 11 Is the advance decision: In writing AND Signed by the person making it or by somebody else on his behalf and at his direction AND Signed by a witness? decision to refuse the specified life sustaining treatment YES: Continue with the checklist NO: This is a binding advance decision to refuse the specified non-lifesustaining treatment. It must be respected and followed. YES: Continue with the checklist NO: This is not a binding advance decision to refuse the specified lifesustaining treatment. YES TO ALL: This is a binding advance decision to refuse the specified life-sustaining treatment. It must be respected and followed. NO TO ANY: This is not a binding advance decision to refuse the specified life-sustaining treatment 8 The Process of Withdrawing n-invasive Ventilation The patient may choose to withdraw non-invasive ventilation at home or in an in-patient setting such as a Hospice or Hospital. Complex and highly emotional issues may arise around the withdrawal of non-invasive ventilation for families, carers and health professionals. These need to be addressed before the withdrawal of non-invasive ventilation, and the need for bereavement care should be addressed at an early opportunity. Staff support mechanisms, including the possibility of a staff de-briefing meeting, need to be considered. The key is to ensure maximum palliation of breathlessness and other symptoms. It is not common practice to wean patients from non-invasive ventilation by reducing ventilator settings as this can prolong the end of life situation and the potential discomfort experienced by the patient. Symptoms should be controlled as far as possible prior to the removal of the ventilation and it should be anticipated that the patients may require drugs to deal with symptoms of breathlessness and anxiety after the withdrawal. These drugs should be available prior to the removal of the mask. The focus of care during withdrawal is symptom control. The patient may require multiple doses of medication to control their symptoms both prior to the withdrawal and after the withdrawal. If a patient is not 24 hour dependent, non-invasive ventilation may be stopped at any point by simply not replacing their mask. The patient may experience increased breathlessness over a period of time requiring appropriate symptom control. If a patient is 24 hour dependent on non-invasive ventilation and its use is to be discontinued, the principles are the same but death is likely to follow more closely. Forward planning is required to ensure that the patient does not experience distress at the time of withdrawal. Consideration and provision needs to be made for family and professionals to be present. 10
9 Involvement of the Multidisciplinary Team It is important to involve relevant members of the multidisciplinary team in the decision to discontinue non-invasive ventilation and the management of withdrawal. Depending on the setting, this should include the Long Term Ventilation Service, and may include the General Practitioner (GP), District Nurse, Speech and Language Therapist, Dietician, Occupational Therapist, Physiotherapist, Consultant in Palliative Medicine, Hospice Physician, Community Palliative Care Nurse Specialist etc. Team members views should be ascertained, and anyone who does not wish to be involved should be given the option of withdrawing from that patient's care. However, any team member who wishes to withdraw needs to ensure that there are sufficient staff still involved to provide care to that patient, and make arrangements to hand over their responsibilities before they withdraw from the patient s care. The professionals who need to be present will vary from case to case and setting to setting. Forward planning is required to ensure that appropriate staff are available. There will need to be a nurse and doctor available, possibly for up to 48 hours. There will need to be a professional present or available at the time of withdrawal and for several hours afterwards to administer symptom control drugs and provide reassurance for the family. This may be extremely challenging in the community but the withdrawal of ventilation is a rare occurrence and where possible provision should be made for this. Good communication with out of hours teams is essential and staff should be identified to provide support. The contacts of out of hours staff should be available and the staff fully informed of what is occurring and the plan of care. 10 Anticipatory Prescribing There is variation between anticipatory prescribing at the end of life between organisations. As there is such variation between patients current medication, each case must be considered on their own merit. Advice can be sought from the local palliative care team, Motor Neurone Disease Centre (Salford Royal Foundation Trust) or the Long Term Ventilation Team. Drugs used may include opioids, benzodiazepines, phenothiazines or other sedatives. Drugs will usually be administered via the subcutaneous route, and a syringe driver may be required and should be made available prior to the withdrawal. The prescribing of anticipatory medications should be considered if the patient is becoming increasingly dependant on ventilation. Although medications should be made available in a timely fashion if medications, these should be regularly reviewed in terms of indications and appropriateness. 11 Practicalities 11.1 Discussion with patient, family/carers and involved professionals is required. The issues which need to be covered will vary depending on the scenario, but may need to include that: (i) When a patient dies with non-invasive ventilation in situ, the ventilator may continue to ventilate the patient even after they have died. It is also possible that the machine may alarm at or after the time of death. (ii) A competent patient has the right to stop any treatment they are receiving by withdrawing their consent. 11
(iii) Stopping non-invasive ventilation (NIV) if a person is dependent on it 24 hours a day, is likely to result in death shortly afterwards this can be unpredictable and can occur in a matter of minutes, although this can sometimes extend to a few hours or even days. (iv) Complying with the wishes of a competent patient is good medical practice, is supported by the GMC Treatment and Care towards the End of Life Guidance, and is in line with the law. It is not Physician Assisted Suicide or Euthanasia. The patient should not have their autonomy limited because of the degree of their disability. (v) If the patient has not written a formal Advance Decision to Refuse Treatment already, this documentation should be completed if the patient is willing and able to do so. 11.2 Consider the practicalities with the patient, family/carers and involved Professionals covering: (i) Ideally the family / carers / professionals involved should be aware if there is an ADRT. If there is an advance decision to refuse treatment this should be discussed and checks made to make the ADRT is still valid. (See Section 7). (ii) Where will the process occur home, hospice or hospital? (iii) The medication required to ensure comfort. (iv) Ensuring that symptoms such as anxiety or breathlessness are controlled as well as possible prior to removing the mask. This may require the commencement of a syringe driver. (v) The probability that bolus injections of medication will be required to maintain comfort. (vi) Who will remove the mask? (vii) Who will switch off the ventilator? (viii) Identify a key worker to co-ordinate the process. 11.3 Discuss with the patient and family: (i) Who wants to be there at the time of death? (ii) Who will remove the mask professional or family member? (iii) The possibility of gasping, changing colour, etc. (iv) The uncertainty in how long it may take to die after stopping non-invasive ventilation (NIV). 11.4 Differences for patients at home compared to inpatient settings need to be considered, such as the availability of professionals who may need to be present for several hours in a patient s home, and the provision of privacy at home when professionals are also 12
present. The LTVS Specialist Outreach Team, General Practitioner and other members of the Primary Care team are likely to be key staff involved with a death at home. 11.5 Timescale (i) Under what circumstances does the patient want to stop non-invasive ventilation (NIV)? (ii) How much notice is required to make appropriate preparations? (iii) Who needs to be available? (iv) Drugs - ensure that sufficient medication is available. A patient who has been on morphine and/or benzodiazepines for some time is likely to require increased doses due to drug tolerance. 11.6 The actual withdrawal of non-invasive ventilation (NIV) (i) Ensure that the patient s symptoms are well controlled prior to the removal of noninvasive ventilation (ii) Use subcutaneous route and have anticipatory medications available. (iii) Switch off the ventilator and remove the mask. (iv) Observe closely while remaining unobtrusive. (v) Use symptom control medications at appropriate doses to control symptoms. (v) Ensure the patient s symptoms are controlled until death occurs. This may take from minutes to several hours. 11.7 After death Bereavement support should be available to the family and carers acknowledging the complex emotional impact of withdrawing non-invasive ventilation. Debriefing and support should be available to the professionals involved. 13
Appendices Appendix 1: Further Information, Useful Contacts and Resources Advance Care Planning: Advance Care Planning: A Guide for Health and Social Care Staff http://www.ncpc.org.uk/sites/default/files/advancecareplanning.pdf This document explores the principles of advance care planning and summarises the key areas. It also provides some guidance regarding how to incorporate ACP into patient care MND Association: Advance Decision to Refuse Treatment Explained http://www.mndassociation.org/resources/mnda/life%20with%20mnd/documents/ 9-advance-care-planning-and-advance-decisions.pdf This document is for patients and carers and explains advance decisions. The MND association also provides samples of advance decisions in their Advance Decision to Refuse Treatment Pack. Advance Decisions to Refuse Treatment Information about ADRT, including example forms, are on the NHSIQ website http://www.nhsiq.nhs.uk/resource-search/publications/eolc-adrt.aspx Long Term Ventilation Service (LTVS) University Hospital South Manchester 0161 291 5390 LTVS 0161 998 7070 UHSM switchboard Palliative Care at UHSM Dr Sophie Harrison, Palliative Medicine Consultant, University Hospital of South Manchester 0161 998 7070 UHSM switchboard 14
Motor Neurone Disease Association http://www.mndassociation.org/ This has information for patients, carers and professionals. It contains information about the just in case kit which is a description of anticipatory prescribing, information on advance care planning and ADRT for patients and professionals. Community Palliative Care https://www.nhs.uk/service-search/end-of-life-hospice-services/locationsearch/342 There are details on the NHS Choices website to allow you to identify local palliative care teams and hospice services GMC guidance on Treatment and Care towards the end of life: good practice in decision making: http://www.gmc-uk.org/static/documents/content/end_of_life.pdf Best interest Decisions Refer to the Mental Capacity and Best Interest Decisions documentation in use in your local area. 15
Appendix 2: Plan for Dissemination Title of Document End of Life Care for Patients on NIV and MND Date Finalised Previous Document already August 2014 ne Dissemination Lead: in use Print name and contact details: Community Lead: Aruna Hodgson Consultant in Palliative Medicine, Bridgewater Community Healthcare NHS Foundation Trust 01942 525566 a.hodgson@wlh.org.uk If yes what format are they in and where? Proposed action to retrieve out-ofdate copies of the document: N/A N/A Trust Lead: Debbie Freeman Lead Nurse, LTVS 0161 291 5390 debbie.freeman@uhsm.nhs.uk Describe the plans for dissemination of the document to specific people groups in specific formats and if appropriate with the relevant training: Dissemination: As per Community Lead and Trust Lead above. 16
Appendix 3 Equality Impact Assessment of End of Life Care and NIV Equality Impact Assessment of End of Life Care and NIV 1. Does the policy/guidance affect one group less or more favourably than other on the basis of: Race Ethnic Origins Nationality Gender Culture Religion or Belief Sexual Orientation including lesbian, gay, bisexual and transgender groups Age Disability 2 Is there any evidence that some groups are affected differently? 3. If you have identified potential discrimination, are any exceptions valid, legal and/or justifiable? 4. Is the impact of the policy/guidance likely to be negative? 5. If so can the impact be avoided? 6. What alternatives are there to achieving the policy/guidance without the impact? 7. Can we reduce the impact by taking different action? Yes/ Comments 17
Appendix 4 References These references are of general interest; some deal with the issues discussed in other countries and jurisdictions and therefore may not be a true reflection of the situation at UHSM or in England and Wales. Aboussouan L et al. (1997) Effect of NIPPV on survival in ALS. Annals Int Med 127:450-3. Ashton, Leigh and Wigan Community Healthcare. (Oct 2010) Policy on Advance Decisions to Refuse Treatment. Borasio G, Voltz R. (1998) Discontinuation of mechanical ventilation in patients with ALS. J Neurol 245:717-722. Brody H, Campbell ML, Faber-Langendoen K, Ogle KS. (1997) Withdrawing intensive lifesustaining treatment recommendations for compassionate clinical management. New Eng J Med 336:652-7. Department for Constitutional Affairs & Department of Health (2005). Mental Capacity Act. Eng D. (2006). Management guidelines for motor neurone disease patients on non-invasive ventilation at home. Palliative Medicine 20:69-79. General Medical Council (July 2010). Treatment and Care towards the end of life: good practice in decision-making, Heffernan C, Jenkinson C, Holmes T, Macleod H, Kinnear W, Oliver D, Leigh N, Ampong M. (2006) Management of respiration in MND/ALS patients: an evidence based review. Amyotrophic Lateral Sclerosis 7:5-15. Leicestershire and Rutland MND Supportive and Palliative Care Group, (vember 2009). Guidelines for Withdrawing n-invasive Ventilation (NIV) in Patients with MND. Lyall R, Gelinas D. (2006) Control of symptoms: dyspnoea and respiratory symptoms. In: Palliative care in amyotrophic lateral sclerosis. Eds Oliver D, Borasio G, Walsh D. Oxford: Oxford University Press. Miller R et al. (1999) Practice parameter: the care of the patient with ALS (an evidence based review). Neurology 52:1311-1323. MNDA (2006) Management of respiratory insufficiency in MND/ALS patients: an evidence based review. National Institute for Health and Clinical Excellence. (July 2010). NICE Clinical Guideline 105. Motor neurone disease: the use of non-invasive ventilation in the management of motor neurone disease Mental Capacity Act (2005). Code of Practice (2007). London. TSO Acknowledgements Based on a Clinical Guideline from Leicestershire and Rutland MND Supportive and Palliative Care Group These Guidelines have been adapted from those written by a working party consisting of: Dr Kim Steel, Specialty Registrar in Palliative Medicine, rth Western Deanery Dr Aruna Hodgson, Consultant in Palliative Medicine, Ashton, Leigh and Wigan Community Healthcare Dr Sophie Harrison, Consultant in Palliative Medicine, University Hospital of South Manchester NHS Foundation Trust & St Ann s Hospice Debbie Freeman, Lead Nurse, Long-Term Ventilation Service, University Hospital of South Manchester NHS Foundation Trust Dr Ameer Aldabbagh, GP, Stockport PCT Dr Andrew Bentley, Consultant in Respiratory Medicine, University Hospital of South Manchester NHS Foundation Trust Dr John Ealing, Consultant Neurologist, Salford Royal NHS Foundation Trust Anne Potter, Community Macmillan Nurse, Tameside & Glossop PCT Dr David Waterman, Consultant in Palliative Medicine, Stockport PCT & St Ann s Hospice 18