This guideline applies to all healthcare professionals working within the Trust who may need to consider withdrawal of non-invasive respiratory support (NIRS) in adult patients who are on the palliative pathway. NIRS, refers to non-invasive ventilation (NIV), Continuous Positive Airway Pressure (CPAP), High Flow Nasal Oxygen (HFNO). Some patients will deteriorate whilst receiving NIRS or may start to find it a burdensome intervention. On those occasions, the patient multi-disciplinary team (MDT) should review the role of NIRS in the ongoing management of the patient. The family and, where possible, the patient should be involved in this review. Any patient with capacity to make decisions about life prolonging or life sustaining treatment may make a request at any time to withdraw NIRS, even if doing so will likely shorten their life. If a patient who is stable on their NIRS is requesting withdrawal of their NIRS even when not acutely unwell, involvement of the respiratory team or palliative care team for additional assessment and support may be useful.

• The patient requests to discontinue their NIV / CPAP / NHFO

• The patient is not tolerating NIV / CPAP / NHFO

• The patient is not recovering from their illness despite maximum therapy.

• The patient continues to deteriorate despite NIV / CPAP / NHFO

• The patient has been placed on NIV / CPAP / NHFO as a bridge to decision making regarding escalation of care and consequently the therapy needs to now be discontinued.

Explanations to patient/family in the case of a medical decision to withdraw:

• The patient has ‘x’ (offer full explanation of background diagnosis).

• Despite maximal appropriate therapy, the patient continues to deteriorate and there are no signs of recovery. We now do not expect the patient to survive this illness and it is no longer appropriate to artificially prolong life with such treatment which may prolong the dying process

• The current treatments should/will be removed as they are not effective/futile.

• The plan of care will now be to focus on those interventions that prioritise the comfort of the patient

• Our primary aim now is to prevent and/or alleviate any symptoms such as pain, distress or breathlessness.

Thereafter, you should offer to discuss the patient’s and family’s wishes and expectations regarding the practicalities of withdrawal (Core care plan goals):

• Spiritual care should be explored and offered.

• Stopping NIV / CPAP / HFNO may lead to distressing breathlessness

• Any distress can be managed with medication via continuous subcutaneous infusion (CSCI) and top up injections. These medicines can cause sleepiness. Sometimes people prefer to be awake with good symptom control if possible, whilst others prefer to be more sedated so that they are unaware of the situation. Ask patient about their preference.

• Switching to O2 via venturi mask can prolong the dying process and potentially increase distress for all involved. If the idea of having no oxygen causes distress for family, you could consider a small flow of supplemental oxygen therapy via nasal prongs.

• Enquire if the patient wishes family to be present at time of mask withdrawal (and whether family wish to be present). If family are going to be present, offer to explain the changes they will see e.g. cyanosis, altered breathing pattern etc.

• Warn family that although patients often deteriorate and die within minutes to hours, occasionally this can take longer

Step 1: Consideration of NIV withdrawal and assessing the situation

Key facts:

• Non-invasive respiratory support (NIRS) is a medical treatment (including, CPAP, NIV, HFNO).

• Withdrawal of NIRS is not euthanasia or assisted dying. It is the stopping of a medical treatment that is harmful, no longer adding clinical benefit or the patient has withdrawn their consent for it.

• Any patient with the mental capacity to make decisions about life-prolonging or life sustaining treatments has the right to request withdrawal of a medical treatment, even if they were to die as a consequence of the withdrawal.

• NIRS can be continued at the end of life if it provides symptomatic benefit. There is no need to withdraw treatment if the patient is identified as dying but is comfortable and tolerated their NIRS.

Withdrawal may be considered in the following situations:

1. Patient is deteriorating despite NIRS and NIRS is not offering any additional benefit, such as symptom control.

2. Patient not tolerating treatment or distressed as a result of the use of NIV, despite the use of pharmacological measures to control symptoms a. Restlessness, pulling off the mask, and turning of the head can all be signs of agitation due to the NIV. b. Exclude other causes of distress e.g. uncontrolled physical symptoms, urinary retention, constipation.

3. Patient with capacity asking for withdrawal of NIRS after a full discussion with a senior member of the team (StR level and above) regarding the risks and consequences.

4. Patient without capacity who has a valid Advance Decision to Refuse Treatment (ADRT) and his/her condition deteriorates so that the ADRT becomes applicable.

Step 2 Decision making:

• A senior clinician (StR or consultant/GP) must be involved in the process of decision making.

• Senior nurses, nurses familiar with the patient, NIRS/respiratory support team members, physiotherapy and other team members involved in the patient’s care, as well as palliative care senior doctors and specialist nurses can all offer support with decision making.

• Check if there are any previously documented advance care plans or preferences relating to NIRS removal – for example on a ReSPECT plan or in an ADRT (advance decision to refuse treatment) document.

• Patients lacking mental capacity who are being considered for withdrawal of NIRS:

• Ensure MCA assessment (specifically relating to withdrawal of NIRS) is clearly documented in the medical notes.

• Check if there is a valid Lasting Power of Attorney (LPA) for Health and Welfare in place. If so the LPA must be consulted.

• If no LPA, the next of kin and other persons identified as important to the patient must be consulted, and decisions must be made in the best interests of the patient (taking into consideration previously expressed wishes of the patient).

• Check if the patient has a valid and applicable ADRT. If so, the ADRT must be followed.

• For patients with capacity, an awareness of previously documented wishes can help to keep the conversation more focused on the priorities of care, especially as the fatigue and the use of the respiratory support can make communication more difficult. Patients with capacity should be fully involved in the decision-making and planning of a NIRS withdrawal.

Patients with mental capacity, who are being considered for withdrawal of NIRS:

• Discuss the withdrawal sensitively, preferably in the presence of family or those identified as important to the patient. Timing of withdrawal:

• Most withdrawals can be done in a non-urgent way.

• Consider an urgent withdrawal if the patient is severely agitated and this is felt to be related to the NIRS.

• Communicating and documenting the decisions: The priority during withdrawal of NIRS is the patient’s comfort, the management of distressing symptoms, and offering support to the patient, family, and the staff involved.

• Discuss and update the persons identified as important to the patient (family/NOK) of discussions and decisions around withdrawal, ideally with them present and a face-face discussion.

• Document the discussions in the electronic patient notes (EPR).

• Update the paper ReSPECT form to reflect the decision of withdrawal to avoid reintroduction at a later stage, unless there is a specific plan to do so.

• Decisions around resuscitation and escalation plans should also be updated on the EPR to allow easier communication between the teams.

• On occasions when a patient wishes to try and remain alert during the withdrawal, consider discussing this with the specialist palliative care team (contact via switchboard out of hours) to share the planning, including about what to do if the patient becomes very symptomatic.

• This could include the temporary re-introduction of the NIRS whilst adjusting the doses of the medication to alleviate the distress, if the patient consents to this (for a patient with capacity). This needs to be considered, discussed and agreed prior to the withdrawal.

• Ensure that the whole team is aware of the withdrawal so that assistance can be easily sought if needed.

• If not already involved, the Palliative Care Team can be contacted for further support (contact via switchboard out of hours).

• Consider whether the patient has any religious needs i.e. offer Chaplaincy input and explore whether early release of the body may be needed.

Step 3: Planning the withdrawal:

Careful planning and preparation prior to going to the patient’s bedside will increase the likelihood of a smooth NIRS withdrawal.

Essential roles checklist:

• Prescriber (e.g. Doctor, ACP, Clinical Nurse Specialist)

• 2 persons authorised to check controlled drugs (e.g. Nurse)

• Person to administer medicines

• Person who is familiar with the NIRS device and will be in charge of weaning / removing it (e.g. Physiotherapist, Ventilation Nurse, ward or community Nurse)

• Scribe, to keep a record of time, medications and doses used etc

• Other roles to consider:

• Relatives or friends - discuss whether anyone would like to be present during the withdrawal, sensitively exploring what will be involved.

• Decide as a team who will support the family throughout the withdrawal.

• Palliative Care Team - may already be involved, can support with advice on optimising symptom management before and during the withdrawal. Out of hours via hospital switchboard.

• Chaplaincy - enquire about any religious or spiritual needs.

Practical steps before the withdrawal:

• See whether your bleep/work phone can be given to someone else - withdrawal of NIRS can take some time, and the aim is to have a calm and undisturbed environment.

• Clarify which PPE needs to be worn, and whether family also need to wear this.

• Insert 2 separate subcutaneous lines - for administration of symptom control medicines before and during the withdrawal (if no IV administration appropriate).

• Draw up two doses of Morphine (or Oxycodone) and two doses of Midazolam (see doses below) before withdrawal. Administer one dose of each at the start of withdrawal.

• Plan for oxygen:

• Plan whether O2 will be delivered after removal of NIRS.

• Which oxygen device will be used?

• If able, involve the patient in this process.

• Depending on patient’s preference and previous symptom burden, this could be: no oxygen, nasal cannula, oxygen via non-rebreathe mask,

• Discuss the possibility of NIRS potentially being temporarily re-applied during the withdrawal process i.e. if the patient becomes very symptomatic whilst waiting for medications to take effect.

Timeframes:

• The duration of time between withdrawal of NIRS and death varies between each individual.

• Patients who are fully dependent on NIRS often deteriorate and die rapidly once this is discontinued i.e. within minutes-hours.

  • This needs to be communicated clearly to the family.

• Patients may exhibit dependency through being unable to tolerate short treatment breaks (seconds to minutes), without severe exacerbation of symptoms.

• Some patients can live several hours once NIRS has been withdrawn - it is important that the clinical team involved, and the patient’s family/friends are aware of this.

Remain observant and considerate of the emotions and the reactions of the team around you, as well as your own emotional response throughout the process. Do not hesitate to ask for support at this stage, if the team are worried about the withdrawal. A structured support and debrief after the acute phase can be helpful to maintain the team’s resilience and well-being.

Step 4: Prescribing:

The aim is to maintain comfort throughout the process. Once NIRS weaning and/or removal is agreed, this often involves the use of medication to make the patient less aware of any distressing symptoms.

Important notes:

• Repeated doses of PRN medication may be needed at doses higher than the standard doses used in the last days of life.

• The standard, starting doses of medications are indicated on the flow chart above and table below. These could vary depending on the patient’s previous exposure and use of opioids and level of symptom distress.

• If in any doubt, please discuss with the palliative care team prior to the withdrawal.

• Patients who appear to be dependent on their respiratory support and are unable to tolerate even short breaks of treatment without worsening of their symptoms are more likely to become distressed and symptomatic at the time of the withdrawal.

Suggested PRN medicines for symptom control in opioid naïve patients - ensure these are prescribed prior to withdrawal of NIRS:

• Morphine sulfate 5 -10mg - subcutaneous PRN, minimum interval 10 minutes, for pain/breathlessness (when eGFR >30 ml/min)

• (or) Oxycodone 2 - 5mg - subcutaneous PRN, minimum interval 10 minutes, for pain/breathlessness (when eGFR is less than <30ml/min)

• Midazolam 5-10mg - subcutaneous PRN, minimum interval 10 minutes, for anxiety/distress/agitation

• Levomepromazine 12.5mg – 25mg subcutaneous PRN, minimum interval 15 minutes, up to 200mg/24hrs, for distress/agitation caused by delirium.

• Hyoscine Butylbromide 20mg – subcutaneous PRN, up to every 4 hours, up to 120mg/24hrs for symptomatic respiratory secretions

Other factors to consider:

• Patients who are already on regular opioids or benzodiazepines may need higher doses. ○ For patients already established on opioids/benzodiazepines, discuss the starting doses of medication with the palliative care team.

• The IV route can be used instead of the SC if a secure IV access is available or rapid titration of medication is needed.

• When a withdrawal is done in a non-emergency situation, consider starting a continuous subcutaneous infusion (CSCI) at least 4 hours prior to the withdrawal to promote comfort.

• Doses will depend on the intensity of symptoms, previous use of medication and patient’s characteristics and co-morbidities. Discuss with the palliative care team.

Step 5: Withdrawal:

The aim is to provide comfort and control of symptoms throughout the withdrawal of NIRS. Some people may become sleepy, but others may still be awake. The aim of the symptomatic treatment should be discussed and agreed prior to the withdrawal. Commence ‘My Care Plan’ for dying patients on EPIC (if the patient is an inpatient) and likely to have prognosis of days to live or shorter.

Local Infection control policies must be followed when using NIV, CPAP or HFNO (Infection Prevention and control roles and monitoring policy, 2024).

NIV and CPAP are AGP’s and therefore consideration must be given to local infection control procedures. Filters may be placed on the machine expiratory port and before the mask/hose ventilation port to reduce the risk of aerosol spread.

Staff providing the care to patients using CPAP, NIV and HFNO must adhere to the current infection prevention and control guidance. Patients may be cared for in a side room if this is advised by the Infection prevention and control guidance.

Mental Capacity and Decision Making

The Mental Capacity Act (MCA) 2005 and amended 2019 provides a legal framework for making decisions on behalf of adult patients who lack the capacity to make the decisions for themselves. The Trust’s Shared Decision Making and Informed Consent policy has further information and some guidance checklists for capacity and ‘best interests’ assessments.

The MCA has introduced a number of terms that may affect decisions; these include Advance Decisions and Lasting Power of Attorneys.

Definitions

ABG - Arterial Blood gas: This is the sampling of blood from an artery used to determine the arterial partial pressure of gases (paO2 and paCO2) as well as pH, HCO3, BE, lactate and electrolytes.

AHRF - Acute Hypercapnic Respiratory Failure: Hypercapnic respiratory failure is diagnosed based on measurements of a patients arterial blood carbon dioxide > 6.5kpa and pH <7.35.

AVAPS – Average Volume Assured Pressure Support and (AVAPS-AE) with Auto Expiratory pressure: integrates the characteristics of both volume and pressure-controlled non-invasive ventilation. A tidal volume is set and there is a set range of IPAP. The ventilator selects an initial pressure for the first breath then titrates to archive the tidal volume between the set IPAP pressures. In AVAPS AE both the IPAP and EPAP and a variable range.

AGP: Aerosol generating procedure. An aerosol generating procedure (AGP) is a medical procedure that can result in the release of airborne particles (aerosols) from the respiratory tract when treating someone who is suspected or known to be suffering from an infectious agent transmitted wholly or partly by the airborne or droplet route.

BiPAP - Bi level Positive Airway Pressure: is NIV using two alternating pressures.

CPAP - Continuous Positive Airway Pressure: This is a device delivering continuous air pressure either at a predetermined setting or on an auto titrating device.

EPAP: Expiratory Positive Airway Pressure

IPAP: Inspiratory Positive Airway Pressure

NIV - Non-Invasive Ventilation: Ventilation using a mask on the face to deliver a set flow of air/O2 under pressure. An inspiratory and expiratory pressure is set +/- tidal volumes to support a patient’s respiratory cycle.

NIRS – Non-invasive Respiratory Support incudes, NIV, CPAP, BiPAP, HFNO.

NHS Lanarkshire (2024) Guidance for Withdrawal of NonInvasive Respiratory Support. Available at: https://rightdecisions.scot.nhs.uk/media/ugajgkze/withdrawal-of-non-invasive-respiratory-support.pdf (Accessed: 06 May 2025).

Association for Palliative Medicine (2024) Withdrawal of Assisted Ventilation at the Request of a Patient with Motor Neurone Disease. Available at: https://apmonline.org/withdrawal-of-assisted-ventilation-at-the-request-of-a-patient/#ld-1714746068514-17320def-06ad (Accessed: 06 May 2025).

This guideline has been registered with the Trust. However, clinical guidelines are guidelines only. The interpretation and application of clinical guidelines will remain the responsibility of the individual clinician. If in doubt, contact a senior colleague or expert. Caution is advised when using guidelines after the review date.

This guideline is for use in Frimley Health NHS Foundation Trust hospitals only. Any use outside this location will not be supported by the Trust and will be at the risk of the individual using it.

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