Faull, Christina

Oliver, David J.

BMJ Supportive & Palliative Care

Kent Academic Repository

Kent Academic RepositoryFull text document (pdf)Copyright & reuseContent in the Kent Academic Repository is made available for research purposes. Unless otherwise stated allcontent is protected by copyright and in the absence of an open licence (eg Creative Commons), permissions for further reuse of content should be sought from the publisher, author or other copyright holder. Versions of researchThe version in the Kent Academic Repository may differ from the final published version. Users are advised to check http://kar.kent.ac.uk for the status of the paper. Users should always cite the published version of record.EnquiriesFor any further enquiries regarding the licence status of this document, please contact: researchsupport@kent.ac.ukIf you believe this document infringes copyright then please contact the KAR admin team with the take-down information provided at http://kar.kent.ac.uk/contact.htmlCitation for published versionFaull, Christina and Oliver, David J.  (2016) Withdrawal of ventilation at the request of a patientwith motor neurone disease: guidance for professionals.   BMJ Supportive and Palliative Care,6 .   pp. 144-146.  ISSN 2045-435X.DOIhttps://doi.org/10.1136/bmjspcare-2016-001139Link to record in KARhttp://kar.kent.ac.uk/57577/Document VersionAuthor's Accepted Manuscript 1  Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals    Christina Faull LOROS Hospice, Leicester, UK  David Oliver Centre for Professional Practice  University of Kent Chatham Maritime Kent, UK  Correspondence Dr Christina Faull LOROS Groby Road Leicester LE3 9QE UK ChristinaFaull@loros.co.uk                  2      The Association for Palliative Medicine of Great Britain and Ireland (APM) has recently published Guidance for Professionals to support their practice in a very challenging area of care (1).The Guidance has been endorsed by the Motor Neurone Disease Association, the Royal College of Nursing, the Royal College of Physicians of London, the Royal College of General Practitioners and Hospice UK, and is consistent with General Medical Council (GMC) standards of good practice (2) and is compatible with coronial law and principles. It has resulted from original research from Faull et al (3) in Leicester which explored the experiences of families and healthcare professionals and found that while there were examples of good practice, there was considerable variation in care and evidence of poor outcomes for patients, families and the professionals involved (4,5).  Motor neurone disease (MND) is a fatal neurodegenerative disease. Although there is variation in the way MND first affects people and the pattern and speed of progression of muscle weakness, at some point almost all patients will have weakness of respiratory muscles. The most frequent cause of death is respiratory failure secondary to impairment of the respiratory musculature, usually within a few years of onset of the illness.  Non-invasive-assisted ventilation (NIV) is a medical treatment that can improve quality of life, symptoms and survival in selected patients (6). The guidance from the National Institute for Health and Care Excellence (NICE) supports its use (7,8) and the use of NIV by patients with MND has increased considerably in this century (9).  Undoubtedly, NIV has many benefits for patients and perhaps the majority of patients with MND choose to at least try NIV  Most patients who do find NIV valuable use NIV for discrete periods of time, most often at night only. However, some patients use NIV for much longer periods of the day to relieve their symptoms and a small number become very dependent, unable to tolerate even a few minutes without it (such as for cleaning teeth or drinking). It is not possible to predict which patients might follow this route when treatment is started.  A very small number of patients with MND may later choose assisted ventilation via tracheostomy (TV) if NIV fails to provide sufficient support. Patients with MND who use TV have, however, more usually had this initiated in an unplanned way when presenting in crisis. The number of patients on TV is unknown but appears to be increasing and is likely to increase further with time. The majority of patients on TV will progress to use this 24 hours a day and some, but not all, will be unable to make any respiratory effort themselves.  Patient decision-making around starting NIV is complex (10). Patients may elect to start NIV for a range of reasons, although an improvement in quality of life is usually of paramount importance. The ability to control discontinuation of assisted ventilation can, for some patients, be a crucial factor for the patient making the decision about starting the treatment. It is of great importance that the patient considering NIV is aware that they can discontinue NIV at any stage in the future if this is their wish. The  2016 NICE Guidance has made recommendations for stopping non-invasive ventilation, including the explanation before starting NIV that it may be stopped at any time and that there should opportunities ĨŽƌƚŚĞƉĂƚŝĞŶƚ ?ƐǁŝƐŚĞƐĨŽƌĐŽŶƚŝŶƵŝŶŐŽƌǁŝƚŚĚƌĂǁŝŶŐE/sƚŽďĞĚŝƐĐƵƐƐĞĚ ?  3   For the majority of patients, assisted ventilation does not complicate the dying process; if its benefit has been lost, then those using NIV only at night may simply choose not to put it back on. For others, assisted ventilation may continue to provide benefit throughout the dying process. However, a very small but potentially increasing number of patients who are dependent on NIV, and some on TV, request that the assisted ventilation is withdrawn because of deterioration in their quality of life due to disease progression. Without the ventilator, these patients are likely to develop acute and severe breathlessness, so the process of withdrawal needs to be managed in a planned and pro- active way to ensure that they receive appropriate symptom management and that unnecessary dis- tress is avoided.  A patient who is ventilator dependent and who decides that they no longer wish to have assisted ventilation has made a difficult decision. This life-ending decision may evolve over time, but often patient decisions around treatment withdrawal arise in the setting of a clinical deterioration, either secondary to an acute problem such as infection or in the  setting of a more gradual decline in function that leads to a persistently unacceptable quality of life. A decreasing ability to communicate effectively may play a significant role in decision-making. Some patients may make a written statement or an Advance Decision to Refuse Treatment with respect to withdrawal in advance of their losing the ability to  communicate or losing capacity for another reason. Others may appoint an attorney for decisions about life-sustaining treatments.  Evidence suggests that too few patients know about their potential choices or are asked about their views of continuing assisted ventilation. There is a clear need for more information sharing and improvement in facilitated decision-making. This information and discussion should occur before starting NIV and throughout the disease progression, so that decisions can be made with full involvement of the patient and those close to them (8).   Professionals have said that providing the care for a ventilator- dependent patient who has asked for assisted ventilation to be withdrawn is practically and emotionally challenging and that a lack of guidance on practical aspects of withdrawal, poor advance care planning, lack of experience and the need to support all involved in order to prevent conflict were significant factors in the impact of this care on themselves and others. Additionally, although the ethics and legality are, in theory, very clear, in practice many voiced considerable uncertainty as to what constitutes ethical and legal defensibility in these scenarios.  The APM Guidance, developed by a multiprofessional group, identifies five standards for care and the processes that will support achievement of these (Table 1). The Guidance also calls for continued gathering of data and outcomes seeking submission of a defined data set by those who undertake this care. As this area of care is rare most practitioners have very limited experience to draw on and the Guidance signposts to  support from colleagues with experience via a list held by the APM secretariat.    References  1 Faull C. Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals. Association for Palliative Medicine of Great Britain and Ireland, 2015. http:// apmonline.org/publications/ (accessed 4 Mar 2016).  4  2 GMC. Treatment and care towards the end of life: good practice in decision making. General Medical Council, 2010. 3 Faull C, Rowe-Haynes C, Oliver D. The issues for palliative medicine doctors surrounding the withdrawal of NIV at the request of a patient with MND: ĂƐĐŽƉŝŶŐƐƚƵĚǇ ? ?BMJ Supp Palliat Care 2014;4:43 W9. 4 Phelps K, Regen EL, Oliver D, et al. Withdrawal ŽĨǀĞŶƚŝůĂƚŝŽŶĂƚƚŚĞƉĂƚŝĞŶƚ ?ƐƌĞƋƵĞƐƚŝŶMND: a retrospective exploration of the ethical and legal issues that have arisen for doctors in the UK. BMJ Support Palliat Care Published Online First: 11 Sep2015. doi: 10.1136/bmjspcare-2014-000826 5 Exploring the experiences of families and health professionals supporting a patient with Motor Neurone Disease (MND) who requests that their ventilation be withdrawn. http://www. loros.co.uk/education-training-research/ research/exploring-mnd-experiences/ (accessed 4 Mar 2016). 6 Bourke SC, Tomlinson M, Williams TL, et al. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: a randomised ĐŽŶƚƌŽůůĞĚƚƌŝĂů ? ? Lancet Neurol 2006;5:140 W7. 7 National Institute for Health Care Excellence. Clinical guideline 105: motor neurone disease; the use of non-invasive ventilation in the management of motor neurone disease. NICE, 2010. 8 National Institute for Health Care Excellence. NICE guideline 42: motor neurone disease; assessment and management. NICE, 2016. 9 K ?EĞŝůů> ?tŝůůŝĂŵƐd> ?Peel ET, et al. Non-invasive ventilation in motor neuron disease: an update of current  UK practice. J Neurol Neurosurg Psychiatry 2012;83:371 W6. 10 Martin NH, Landau S, Janssen A, et al. Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in amyotrophic lateral sclerosis (ALS): a prospective population study. Amyotroph Lateral Scler Frontotemporal Degener 2014;15:376 W87.                        5  Table 1 Summary of the guidance Timing                         Standard             Process to address standard(s)  When starting assisted                Standard 1      Inform patients that they can      A patient should be made aware  choose to stop the treatment at     that assisted ventilation is a form of  any time, that it is entirely     treatment and they can choose to  their right and legal and that     stop it at any time.    their healthcare team will          manage their symptoms in a          different way             They should be in no doubt that   Offer patients and, with due      this is legal and that healthcare    regard for confidentiality, families     teams will support them    the opportunity to discuss future           scenarios when assisted ventilation          is being considered             .           Promote the concept of advance            care planning, and discussion of            wishes and values with patients          who use assisted ventilation,            especially those who have lost          one modality of communication.             Assess and discuss capacity for          the decision about treatment          and its continuation.  Withdrawal of assisted  Ventilation             Standard 2      Senior clinicians should validate   Affirm the decision by assessing     the patient¶s decision and    the patient¶s capacity or validity     lead the withdrawal   and applicability of an advance          decision to refuse treatment          (ADRT) and that this is a settled          view; allowing a period of time          for discussion and reflection          between the initial conversation          and the patient¶s final decision                  Standard 3      Withdrawal should be undertaken   Planning, coordination and      within a reasonable timeframe    communication are vital tasks       after a validated request.             Standard 4      Discuss with the patient and           family when, where and how      Symptoms of breathlessness    withdrawal will happen, including      and distress should be    the potential for living for some     anticipated and effectively    hours without the ventilator and    managed     occasionally longer.                   Discuss with the professionals           when, where and how withdrawal          will happen; identify key people          and their roles. Ensure members          of the team understand the          ethical principles and the legal          position.           Make a plan for symptom           management. Key decisions are:           Does the patient require          sedation before assisted          ventilation withdrawal:          ventilator-dependent   6           patients, using >16 hours a          day; very short periods off          ventilator before distress.          OR          Does the patient require          augmented symptom           control: can patient           manage some hours off          assisted ventilation?               What drugs, doses, route?   Who will prescribe and   administer?   Who will manage the   ventilator and how will  settings be adjusted and  mask/tubing removed?           Administer anticipatory           medication, titrating opioids and          benzodiazepine to manage           symptoms            For those who are ventilator-         dependent, assess effectiveness          of symptom management by          reducing or stopping assisted          ventilation for a few minutes          before full removal.             Continue to titrate           opioids and           benzodiazepine to           manage symptoms.  After death Standard 5 After the patient¶s death, family members    Consider the needs of family should have appropriate support and   members and professionals opportunities to discuss the events with the   after death            professionals involved       Plan who will provide support            to family members           Debrief for              professionals/significant  event            analysis.           Submit data set and share key           learning.   

Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals

Christina Faull

David Oliver

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Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals: Table 1

https://kar.kent.ac.uk/57577/1/Faull%20and%20oliver%20submitted%20version.pdf

Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals

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