Guidance on Withdrawal of Respiratory Support for conscious patients at the end of life

Wednesday, April 14, 2021

Dr Suzie Gillon and Dr Alison Boland highlight a guidance document on withdrawing ventilatory support,  developed by Leeds Teaching Hospitals NHS Trust.


This guidance provides information for clinicians on withdrawing respiratory support in conscious adults who are receiving end of life care.

Can you provide a little background outlining how this guidance document was developed?This guidance was developed a few years ago, prompted by reflection from Intensivist colleagues about specific challenges withdrawing respiratory support in conscious patients. Guidance existed from the Association of Palliative Medicine around withdrawal in MND patients, but nothing for a more general patient group. A wide group of professionals were consulted, including Palliative Medicine, Respiratory Medicine, Intensive Care Medicine, and Ventilation specialists.

As a result of the COVID pandemic our guidelines have had more widespread use, not just in our hospital, but in hospitals around Yorkshire with requests from around the country to share this guidance.
We are aware that caring for patients at the end of life does not rest solely with palliative care professionals and we felt it really important to share this work with a broader respiratory audience. Recent experience has highlighted how important it is that this is done well, not only for patients and their loved ones, but also to reduce associated distress in the multidisciplinary team caring for these patients.

Who was the document written for?This is most relevant for respiratory and intensive care teams, although may be applicable to acute and general medics depending on how services are configured locally.

The intended audience is any colleague who is involved in caring for conscious adults (aged over 18), who meet the following criteria:

• Thought to be dying (prognosis hours to days) despite respiratory support
• Who are likely to die as a consequence of withdrawal of respiratory support
• Dependent on respiratory support regardless of diagnosis (including CPAP, Bi-level ventilation, or high flow oxygen via face-mask or tracheostomy)
• Likely to be/at risk of becoming distressed on withdrawal

This is clearly a very complex area. Does the document help to highlight those patients where it may be appropriate to consider withdrawing respiratory support?This guidance has been developed to help clinicians once the decision to withdraw support has occurred, rather than to guide decision making. In all cases a consultant – usually a Respiratory Physician or Intensivist – must be involved in all discussion and subsequent decision making. In particularly complex cases it may also be necessary to involve your Ethics Committee.

What impact do you hope the guidance document has?These clinical situations can be challenging and distressing when not handled optimally. We have found in our experience that when used well this guidance can help facilitate a dignified and well managed end of life experience for patients, their loved ones and staff.

Can you outline the key steps involved?The guidance (click to download) advocates an individualised approach for each patient, but is informed by a wealth of clinical experience. Patients are divided into two groups based on their overall dependence on the ventilatory support and practical guidance is given in flow chart form regarding symptom management.
A step-wise approach is advocated with attention given to optimum symptom control at each step before any reduction in ventilatory support. The goal is to achieve appropriate levels of symptom management (which may include sedation) so that there are no sudden crises at the point of withdrawal.

It is also worth acknowledging that a small group of patients will continue to derive symptomatic benefit from their respiratory support until the point of death, and in some cases it may be appropriate to continue this, alongside other symptom management.

Consideration of the wider holistic needs of the patient and family are given within the document. Responsibilities and concerns of staff are also acknowledged which has never been more important than during this pandemic. It has been so essential to support their health and wellbeing, given the high numbers of patients they have been seeing in this situation.

What are the key messages you would like to share with colleagues working in respiratory medicine?
• All staff involved in the care of patients on respiratory support need to be familiar with this approach and any local guidance.
• Honest discussions around the benefits and burdens at point of initiation of respiratory support is important especially in COVID where outcomes remain relatively poor for patients with level 2 ceiling of care.
• Early advance care planning and discussions around ceilings of care are key for any patients being admitted to a Respiratory Support Unit or intensive care. This can be facilitated/documented with the use of the ReSPECT form , or other similar documentation .
• A strong MDT approach is essential to providing good end of life care and physicians should regularly be in discussion with the nursing and wider multi-disciplinary teams particularly around symptom control and patient distress with treatment.
• One other point to note, not specifically linked to withdrawal, is that consideration of symptom management alongside trial of active treatment in some cases allows better tolerance of respiratory support.
Collaborative working between respiratory and palliative medicine can be beneficial for professionals and patients, and can help to facilitate an environment where staff are supported to deliver excellent end of life care.