Information for professionals when making end of life treatment decisions with patients with Motor Neurone Disease (MND)

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1 Information for professionals when making end of life treatment decisions with patients with Motor Neurone Disease (MND) Recognising the dying process allows the patient, their family and professionals to make appropriate plans. How do I recognise the dying process? Arthur Rank House Brookfields Hospital 351 Mill Road Cambridge CB1 3DF Tel: Fax: Although some patients may die suddenly of respiratory failure, the majority of patients will deteriorate over the course of days or weeks. Depending on the pattern of disease this may present with changing symptoms such as: worsening breathlessness despite optimal non-invasive positive pressure ventilation (NIPPV) settings increasing anxiety and distress periods of unconsciousness increasing drowsiness increasing dependence on NIPPV bubbly chest confusion restlessness increasing weakness and fatigue decreasing ability to communicate deterioration in speech or loss of ability to use aids decreasing concentration and withdrawal from the world global deterioration recognition by patient or family that death is imminent What treatments should I consider discussing? Some patients and families will have discussed end of life care already and may have written plans in place. It is important to ascertain what the patient and family understand about the current and future focus of care. Take the opportunity to review any previous plans and formulate new ones as required by the changing clinical situation. 1

2 You should discuss continuing, withholding or withdrawing (depending on current treatments): Percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG) feeding PEG or RIG fluid administration NIPPV Daily medications Disease modifying medications e.g. riluzole Antibiotic administration Invasive ventilation Also consider discussing: Decisions regarding resuscitation Preferred Priorities for Care decisions (PPC) Preferred Place Of Death decisions (PPOD) Even if these decisions have been discussed before, it is worthwhile ensuring that the above decisions/documents are up-to-date If the patient wishes to stay at home also consider: Symptom management measures The use of subcutaneous medications Spiritual needs Care needs The patient wants to have treatment withdrawn If a patient is competent to make decisions about treatment their decisions must be respected and acted on. A competent patient can refuse life prolonging treatment at any stage of their illness. As death approaches this becomes relevant as treatments that prolong life may now cause distress or may prolong the dying process. When a patient has expressed their wishes and given their consent, it is legal for a doctor to switch off a NIPPV machine or withhold artificial nutrition and fluid. Legally this is not considered to be assisted suicide but the withdrawal of treatment that is no longer desired. Good symptom control will be required to alleviate any symptoms that may occur as a result. The patient is dying and cannot make decisions. How should decisions be made about their care? If the patient is close to death and can no longer make decisions (i.e. is no longer competent) a best interests decision should be made regarding treatment. Best interest 2

3 decisions involve weighing up the risks and benefits of treatments whilst taking into account the patient s wishes, advance care plans, beliefs, values and feelings. This usually requires discussion with those familiar with the patient, for example, other healthcare professionals, the next of kin or a Lasting Power of Attorney (LPA) for health (if one has been appointed by the patient). The final decision whether to continue or withdraw / withhold treatment rests with the doctor in charge of the patient s care. If the treatments are now causing more harm than good, or are ineffective, they can be withdrawn or withheld. Legally this is not considered to be a form of euthanasia but is recognition that life sustaining treatments are no longer effective or their administration is on balance, too burdensome. Where do advance care plans fit into best interest decision-making? Advance care plans are used to inform care when the patient is no longer able to make their own decisions. Advance care plans come in the form of an advance statement and/or Advance Decision to Refuse Treatment (ADRT). It is important to distinguish between an ADRT and an advance statement as their role in decision-making differs: Advance statements An advance statement contains wishes for future care and although not legally binding needs to be taken into account when a best interests decision is made. One example is the Preferred Priorities for Care document (PPC). Advance decisions to refuse treatment When completed correctly (valid) and containing instructions covering the current clinical scenario (applicable), an ADRT is legally binding and must be used to inform care. These instructions may not always appear to professionals to be in the patient s best interests, however they must be followed. If these are not followed the professional could potentially be charged with assault for administering treatment without the patient s consent. Lasting Power of Attorney The patient may have appointed a health and welfare lasting power of attorney (LPA) who will present the patients views when making a best interests decision. They must act in the patient s best interest. They can only be involved in making decisions about lifeprolonging treatment if they have been specifically instructed by the patient to do so. If an ADRT has been written after the LPA has been appointed the ADRT must be followed rather than asking the LPA to contribute to a best interests decision. 3

4 Reviewing advance care plans Even if the patient is currently competent to make decisions; it is good practice to review these documents as people often change their minds about where they wish to be cared for or which treatments they wish to refuse. An example: 12 months ago Mrs Atkins documented in an advance care plan that NIPPV can be removed when she becomes unconscious and that she wishes to go into the hospice when she is dying. She is now reliant on NIPPV throughout the 24 hour period and is frightened and breathless. A syringe driver with medications to treat her symptoms will shortly be commenced. After discussion Mrs Atkins acknowledges that she cannot manage without NIPPV and wishes to continue it when she becomes unconscious and until she dies. She also informs you she now wishes to die at home. Continuing treatment The outcome of a best interests discussion or a patient decision may be that some or all treatments will continue. Providing these treatments are tolerated and do not cause distress, this is entirely appropriate. How to withdraw treatments The processes of withdrawing NIPPV and artificial nutrition/hydration should be considered separately. In practice competent patients may chose to withdraw both treatments or may continue one but not the other. Withdrawing NIPPV: who needs to be involved? This procedure requires careful planning Unless you are skilled and experienced in withdrawal of treatment and end of life care, do not proceed until you have arranged for specialist palliative care involvement in the planned withdrawal. (Even if you are experienced, specialist palliative care may be able to offer professional and family support and advice now and after the patient s death) For example: For patients at home, in a nursing home, or in community hospitals in Cambridgeshire: Contact the Arthur Rank House Hospice (in other areas contact the local specialist palliative care team). 4

5 A member of the specialist palliative care team (usually a consultant and/or a senior nurse) will visit the patient at home. The specialist palliative care team member will assist the patient and family with discussions and with symptom control including practical support if NIPPV is to be withdrawn. It will be helpful if the District Nurse or GP is also present during these home visits. Alternatively the patient can be admitted to the hospice (preferable) or hospital for withdrawal of NIPPV. For patients in acute hospitals: Unless you are skilled and experienced in withdrawal of treatment and end of life care consider involving the specialist palliative care team following local procedures for referral Withdrawing NIPPV: what to expect If the patient is dependent on NIPPV 24 hours: The removal of the mask and switching off the NIPPV needs to be planned in advance to anticipate any problems and to support the patient, family and healthcare professionals. The patient will experience increasing dyspnoea and distress unless given appropriate medication including oxygen. Death may follow quite quickly after withdrawing NIPPV although the family and patient will need to be prepared that this could be over the course of hours or in some cases days. The patient is likely to become cyanosed, may exhibit gasping, noisy or agonal breathing and will require medications to treat this. Although the PEG/RIG route (if present) can still be used for medications, anticipatory prescribing and availability of subcutaneous medications with provision for a syringe driver and regular monitoring is necessary to achieve good symptom control. If the patient is not dependent on NIPPV 24 hours: The patient may experience symptoms as above. Depending on the residual respiratory function the prognosis after discontinuation of use is variable. Withdrawing NIPPV: preparing for anticipated symptoms If NIPPV is going to be removed and the patient is already experiencing symptoms of distress or breathlessness, medications to treat this should be commenced prior to removal. 5

6 One way to do this is to set up a syringe driver at least 12 hours prior to removal. Start with the minimum doses required to ensure symptom control and titrate as needed. (see next page for suggested medications and doses). The primary aim in giving these medications is to relieve symptoms and distress and not to sedate the patient. However, the side effects of the medication may cause the patient to feel drowsier or to sleep for long periods of time. As this can affect their ability to concentrate and communicate, the patient and their family will need to be made aware of this. They may wish to say their goodbyes before the medication is commenced. Consider prescribing oxygen (if not in place already) which can be administered at the time of withdrawal. This will be helpful if the patient exhibits signs and symptoms of respiratory distress. If at the time of withdrawal the patient is deeply unconscious, oxygen will not be required. Do not start any medications without involving the specialist palliative care team (community) or considering the need for input from the specialist palliative care team (acute hospital). Decide which healthcare professionals will be present with the patient at the time of withdrawal. This includes who will prescribe and who will administer the medications. Decide which healthcare professionals will monitor the patient and be present to administer medications if needed after NIPPV has been withdrawn (if the patient is in the community, out of hours services will need to be informed and involved as necessary). The following doses are examples of common dose ranges that may be suggested by the specialist palliative care team who may recommend setting up a syringe driver to run over 24 hours. This does not take into account any opioid medications the patient may already be on and other opioids may be used e.g. morphine. To be given via a syringe driver over 24 hours: Midazolam: 10mg 60mg The starting dose depends on the level of distress, previous use of benzodiazepines, degree of anxiety and breathlessness. Diamorphine: 5mg 10mg The starting dose depends on previous opioid usage and degree of existing breathlessness. Haloperidol: 1.5mg 3mg If the patient is opioid naïve or has had symptoms of nausea or vomiting, otherwise omit. 6

7 Glycopyrronium: 600 micrograms 1.2mg If the patient already has excess secretions or is likely to get them as they deteriorate. Prescribe as required bolus subcutaneous drugs Midazolam: 2.5mg 10mg for agitation, SOB, distress Glycopyrronium: 400 micrograms for secretions Haloperidol: 1.5mg for nausea and vomiting Diamorphine: 2.5mg 5mg if opioid naïve (or 1/6 of syringe driver total 24 hour dose) for pain, SOB The frequency of administration of boluses depends on the anticipated symptoms and should be decided in conjunction with the specialist palliative care team. Withdrawing NIPPV: at the time of withdrawal Ensure that the patient (if competent) still wishes to go ahead with the planned withdrawal and that all preparations are complete If the patient is not competent ensure that withdrawal is in accordance with their ADRT (if they have one) or is still in the patient s best interests Ensure that all healthcare professionals are clear about their role and responsibilities Ensure that any carers or relatives understand the procedure and have been given the opportunity to say goodbye (if they wish to do so) Suggested procedure The administration of medication will depend on the symptoms experienced during and after withdrawal. Examples are given as a guide. The intention of using medications is to relieve symptoms of distress and not to hasten death. Before removing the mask/switching off the ventilator: Ensure that the patient is comfortable and is not distressed before proceeding with removal/switching off If the patient is too alert or distressed: Prepare midazolam 5-10mg sc boluses (this can be given intravenously if this withdrawal is taking place in hospital) Administer a bolus of midazolam pre mask removal/switching off NIPPV 7

8 Wait at least 20 minutes for the midazolam to take effect Repeat midazolam bolus as needed until the patient is sedated to a comfortable level If the patient is not distressed: Administer a bolus to prevent distress on removal Wait at least 20 minutes for the midazolam to take effect Removing the mask: Prepare another midazolam bolus ready to use as the mask is removed Switch off the ventilator and/or remove the NIPPV mask Observe for signs of distress Administer oxygen via nasal cannulae or mask if using (pulse oximetry is not required in the community) Administer further boluses of midazolam, at 10 minute intervals, until symptoms are controlled Communicate the ongoing plan for monitoring to other healthcare professionals as needed Continue to monitor, assess and respond to symptoms until the patient dies. Informing others: Wherever the patient is being cared for inform other relevant members of the multidisciplinary teams when the patient dies The patient has asked to discontinue PEG/RIG feeding: It is more common that patients choose not to have artificial feeding than request discontinuation of feeding. However, a competent patient can request withdrawal of feeding and hydration at any stage of their illness. The patient must be made aware of the possible symptoms of hunger and thirst and what measures can be taken to palliate these symptoms. If the patient wishes to stop feeding but not hydration: Discontinue feeding but discuss continuing or increasing fluid administration instead. Review this daily. Continuing administration of a basal amount of fluid will allow the patient to be more comfortable but may also prolong the dying process. Review the continuation of fluids on a daily basis. 8

9 If the patient wishes to withdraw both feeding and fluid: Discontinue both feeding and fluid administration. Review daily. Consider the use of sedation if desired or if signs of distress develop. Fluids may be restarted for comfort but if feeding is restarted after a period of receiving no nutrition the patient is at risk of re-feeding syndrome: feeding will need to be cautiously introduced after discussion with the nutrition or gastroenterology team. The patient is not competent to make decisions If a patient has documented the decision to stop artificial nutrition and hydration in an advance decision to refuse treatment (ADRT) and the situation they anticipated has arisen (i.e. the ADRT is applicable) it should be followed. For example the ADRT states: When I become unconscious I would like my feeding and hydration via my PEG tube to cease. When the patient is unconscious feeding and hydration must be withdrawn. If there is no ADRT and a best interests decision must be made, feeding or hydration can be removed if either is causing more harm than good, is ineffective, is causing distress or prolonging the dying process. Communication These decisions require sensitive open communication with the patient, family and other healthcare professionals to ensure that the aims of treatment are understood. End of life treatment discussions are emotive and if the patient has not thought about their end of life care before the dying process begins, may have to take place over a very short period of time. Personal health beliefs can influence the views of the practitioners and their approach to these decisions. If in doubt, discuss the ethical and legal issues with the local specialist palliative care team, or your defence body, or legal department of your local trust. Conscientious objection is not recognised as a valid reason for declining a request from a competent person to withdraw treatment. However, if the practitioner feels unable be present when withdrawal of treatment takes place, it is their duty to find another practitioner who will be able to support and treat the patient as required. 9

10 References 1. Chan JD et al. Narcotic and benzodiazepine use after withdrawal of life support: Association with time to death? Chest 2004;126: Leicestershire and Rutland MND Supportive and Palliative Care Group. Guidelines for withdrawing non-invasive ventilation in patient with MND Treatment and care towards the end of life. Good practice in decision making. General Medical Council Mental Capacity Act Motor Neurone Disease Association 2005.Summary of guidelines for respiratory management in MND/ALS. 5. St Wilfred s Hospice Chichester. Clinical guideline 9b Withdrawing non-invasive ventilation from MND patients Leicestershire and Rutland MND Supportive and Palliative Care Group. Guidelines for the withdrawal of ventilation (NIV) in patients with MND Leicestershire and Rutland MND Supportive and Palliative Care Group Pathway for Preparing to Withdraw Non-Invasive Ventilation (NIV) in Patients with MND MNDA Management of respiratory insufficiency in MND/ALS patients: an evidence based review 9. Miller RG, et al Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: multi-disciplinary care, symptom management, and cognitive/behavioural impairment (an evidence based review): report of the Quality Standards Sub-Committee of the American Academy of Neurology. Neurology, Oct 2009;73/15( ) 10. Meyer T et al. Elective termination of respiratory therapy in amyotrophic lateral sclerosis. Nervenarzt, June 2008;79/6(684-90) 11. Dixon R et al. Withdrawal of non invasive ventilation (NIV) by patient request: development of guidelines and best practice. Palliative Medicine, 01 March 2010;24/2(245) 12. Eng D. Management guidelines for motor neurone disease patients on non-invasive ventilation at home. Palliative Medicine, March 2006;20/2(69-79) 13. Polkey MI, Lyall RA, Davidson AC, Leigh PN, Moxham J. Ethical and clinical issues in the use of home non-invasive ventilation for the palliation of breathlessness in motor neurone disease. Thorax, April 1999; 54/4(367-71) 14. Voltz R, Borasio GD. Palliative therapy in the terminal stage of neurological disease. Journal of neurology, October 1997;244 Supp 4(S2-10) 15. Borasio GD, Voltz R. Discontinuation of mechanical ventilation in patients with amyotrophic lateral sclerosis. Journal of Neurology, 1998;245( ) 16. Gannon C. A request for hospice admission from hospital to withdraw ventilation. Journal of Medical Ethics, July 2005, 31/7(383-4) 17. Scwarz JK, Del Bene ML. Withdrawing ventilator support for a home-based amyotrophic lateral sclerosis patient: a case study. Journal of Clinical Ethics, 2004; 15/3(282-90) 18. Billings JA, Krakauer EL. On patient autonomy and physician responsibility in end-oflife care 10

11 Dr Lorraine Petersen June 2012 Consultant in Palliative Medicine Arthur Rank House Hospice Cambridgeshire With input from the Eastern Region MND respiratory subgroup 11

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